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Category Archives: Medical
A Study Of Disability, Informed – Surrogate Consent, And Ethnocide
Glenn Hladek,†University of Montana
The ethical debate regarding life-saving organ transplants no longer embodies the emotional content generated by the first successful transplant in 1955. The decision of life – no life, and the success of medical intervention has certainly muted that debate. The current ethical debate is directed at biomedicine’s involvement in quality of life issues such as gene therapies, surgery in utero, and the implantation of a device to stimulate the 8th nerve of born-deaf infants. These interventions are specifically directed to alter, eliminate, or correct non-life threatening conditions. This paper specifically addresses Cochlear Implants (CI) in born-deaf children, with emphasis on trait vs. disability, informed-surrogate consent and the possible demise of the deaf culture (ethnocide). An introduction to Deaf culture and Cochlear Implants (CI) provide a framework for later discussion of disability, proxy consent, and ethnocide.
Culture is defined as the ideas, customs, skills, and arts of a given people in a given period. A common language is generally accepted as necessary to share these aspects of the culture. The Deaf culture is a group of individuals, generally born-deaf, and who communicate with American Sign Language (ASL). The Deaf culture is both defined and bound by their deafness and their language. Members of this Deaf community regard themselves, their identity, and their interpretation of the world as the norm. They believe that deafness opens them up to membership in a community with it own rich history, language and value system rather than a disability that condemns them to a world of silence. The Deaf pride movement culminated during the Gallaudet student demonstrations in the 1986 “Deaf President Now” action. This demonstration provided the general public with its first contact with the concept of Deafness as a culture and not as a disability. Ninety percent of born-deaf infants are born into families of hearing individuals. The primary means of communication, education, affection, and the transfer of cultural information in hearing families is auditory-verbal.. The acculturation of deaf children into the Deaf culture does not occur at the knee of their hearing Grandparents, or around the dinner table of their hearing siblings and parents. The acculturation of these deaf children, instead, occurs at residential schools for the deaf, or later at post secondary programs for the deaf, at deaf churches, and deaf civic or social organizations. The hearing community defines the Deaf culture by its loss of a species-typical trait, hearing (a disability), while the Deaf culture defines itself by its unique visual language (heterogeneous trait) . This different perspective focuses the dilemma. It is not an ethical dilemma when adults make decisions regarding themselves about whether to have a CI or not. However proxy decisions, for infants, that effect their communication mode and their inclusion in a specific culture does have serious ethical implications.
Cochlear implants are a surgically implanted devices that provides electrical stimulation to the 8th Nerve. In hearing people, the 8th Nerve is stimulated by signals that are processed through the hair cells of the cochlea. In most profound hearing loss the hair cells of the cochlea have been destroyed, resulting in a loss of sensitivity, and a loss of frequency resolution. A CI produces tiny electrical currents that directly stimulate the auditory nerve fibers, bypassing defective or absent hair cells. Frequency resolution occurs for a CI patient because the implant filters sound into different frequency bands and these bands are transmitted to different electrode positions which then stimulate “high pitch” producing nerve fibers and “low pitch” nerve fibers. A born-deaf infant experiences auditory stimulation, that is different from normal hearing infants. Cochlear implant stimulated infants create their own catalog of auditory experiences.. It is the task of parents, siblings, teachers, speech-language pathologists, and audiologist to make this audible signal, presented to an infant with the neural plasticity to organize this novel sensory input, into meaningful language. The neural plasticity of the brain is significant and related to age. The primary language-learning years are 0-3 years of age. To implant a prelingually deaf child at a later age is doomed to failure. Members of the audiologic community have argued that it is in fact unethical to implant a prelingually deaf child at a later age because of the poor prognosis for the successful development of oral language (Rose). CI at a later age will not change or provide options; the child is and will remain a functionally deaf individual, even if some auditory stimulation is provided. A decision to wait to implant at a later age narrows dramatically the options to the child.
TRAIT VS DISABILITY
There is a long history of viewing deafness as a deficit condition. Aristotle said that those born deaf “become senseless and incapable of reasoning” (Carver). St. Augustine taught that the deaf were excluded from salvation on the grounds that they could not hear the world of God (Carver).. The Deaf community has struggled to remove the medicalization of deafness. They have protested the deficit concept of deafness and have worked to develop a healthy self-concept of deafness. Members of the Deaf culture celebrate their deafness, and many, if given the opportunity to hear, would choose to remain deaf because they do not see deafness as a disease or a disability, only as a difference. Padden and Humphries describe the Deaf culture’s perception as having a “different center” (Ramsey, pg. 81). Whereas hearing people work from the perspective that their hearing status is the norm, deaf people assume their deaf status is the norm. Each group is working precisely as members of a specific culture is expected. These different centers impact the way that each culture views the cochlear implant. Members of the Deaf culture view an attempt to make them into hearing individuals as discriminatory, and as some members of the Deaf culture have indicated, as an assault on their personhood. The hearing community, on the other hand encourages any attempt to move closer to their concept of center, which reflects their enthusiasm and general support for cochlear implants. The ethical conflict considered here arises when an attempt is made to change the center of an incompetent infant from one cultural group to another cultural group. The Deaf culture views the implantation of an infant as an attempt to assimilate the infant into a culture different from its birthright. Harlan Lane has argued that children born deaf to hearing parents are biologically members of the deaf community at birth, even if they are denied the opportunity to acculturate. They view it analogous to the removal of young Indian children from their homes and placed in Government sponsored boarding schools. Just as you can’t remove a child’s Indianess by changing his culture, Dr. Lane contends that you can not remove a child’s deafness, his birthright to the culture of silence. (Ramsey, pg. 82) Larry Stewart, a leader in the Deaf community has argued against the concept of a deaf culture. He notes that Deaf culture was not discovered, it was created out of political necessity. He believes the meaning of culture is so powerful and complex, that it can not be applied so narrowly to a group of highly diverse deaf American citizens. He finds the comparison of Deaf culture to racial or tribal minorities to be inappropriate. Acculturation is a process; one is not culturally Polish by virtue of his birth to Polish parents in the United States, but becomes culturally Polish by inclusion and participation in those things Polish. He states that deaf individuals lack one of the five critical senses. They are unable to talk on the phone, can’t go to the movies unless subtitles are provided, can’t hear music, can’t hear their children or grandchildren laugh or cry, and can’t get any job without having to consider how their deafness will interfere with the job duties. They find the creation a a culture based upon these deficits to be clearly nonsensical (Tucker, pg. 7). The Deaf communities concern regarding CIs is not unlike the disability-rights movement concern regarding the technologies of genetic testing. In both cases, activists argue that both technologies advance a form of discrimination by having a single trait stand in for the whole person. Rather than accept the person in his or her entirety, a single trait identifies the individual as needing intervention so that the person can be more “normal”, or can be labeled as too flawed to exist and not worthy of being born. In both cases the individuals that presently exist with these diseases or traits receive a message that disparages and demeans their lives. Additionally both groups are concerned that if genetic testing or CI were to become public policy, then funding for education, rehabilitation and public support for affirmative action for these disabilities will become problematic.
DECISION MAKING ON BEHALF OF MINORS
Consent is a powerful moral warrant. Informed consent, however requires cognitive capacities, such as the ability to be conscious of oneself as existing over time, the ability to appreciate reasons for or against acting, and the ability to engage in purposive action (Buchanan, pg. 78). Clearly infants don’t have the competency to provide informed consent. The absence of the capacity to make an informed consent must be provided by another. The decisions about the medical care of minors traditionally has involved the child’s parents and the state, with the primary responsibility being the parents’. These types of judgments rely upon “best interest” judgments, since substitutive judgments require a previous state of competency. The Deaf community contends that since the parents of most deaf-born infants are hearing they have no perspective upon which to base their decision regarding cochlear implants, that without intimate knowledge of the Deaf culture, hearing parents can’t make a “best interest” judgment. They maintain that hearing parents’ decision to implant deaf children without consulting the Deaf community renders the decision “ill-informed, ill-prepared, ill-advised, ill-founded, and ill-fated. They recommend that a member of the Deaf community join the parents and the state as interested parties to protect the decision from parental bias and ensure consideration of all possible alternatives. The warrant of proxy consent regarding the implantation of a CI is a serious one. The decision may pit two principle-based ethics, autonomy (concern for the parent’s right to decide about matters of their children) and beneficence (concern for the child’s quality of life). Dena Davis suggest a more appropriate construct of this conflict; parental autonomy versus the child’s future autonomy, or what Joel Feinberg has called “the child’s right to an open future” (Davis, pg. 9). Any decision that jeopardizes or narrows the scope of the child’s choices when she reaches adulthood would violate her autonomy, and thus violate her right to an open future. Lipson agrees when he says that while infants are clearly worthy of moral consideration, their moral status is one of potential autonomy. Any interference with the development of this potential autonomy is impermissible, and some would say we have a duty to aide in that development. Davis and Feinberg maintain that “best interest” decisions must have the child’s interest as an end. They would assert that it violates the Kantian principle of treating each person as an end and never as a means only, when a child is forced into either the parents’ notion, or the Deaf culture’s notion of the good life, without consideration for the child’s open future. To do so would deny that the child will someday exist for her own sake. The “best interest” decision is the one which provides the child with an open future, with important rights that need to be protected now, so that the child can exercise them later as an adult.
This section of the paper addresses three distinct areas for ethical analysis in the cochlear implantation of born-deaf children: 1) disability, 2)proxy consent, and 3) ethnocide of a culture. DISABILITY The basis for an auditory – verbal language system is auditory input. The development of an oral language system without auditory stimulation is an arduous task. The ability to hear adequately to develop an oral language system is shared by 99.9965% of the citizens of the United States. There are approximately 700,000 deaf individuals who do not hear adequately to develop this oral language system without assistance. Hearing is the necessary conduit for auditory stimulation that allows the development of the oral language system that unites a majority of the human community. Some members of the disability-rights community and the Deaf community advocate that we “choose who will be disabled”, that disability is a social construct. Most members of these two groups do not deny, however, that departures from species-typical functioning, foreclose some options. A lack of strength, or agility, or loss of vision , or a loss of hearing are “real” and not an artifact of any interaction with the environment. It is Adriene Asch who writes, “The inability to move without mechanical aid, to see, to hear, or to learn is not inherently neutral. Disability itself limits some options”(Parens, pg. S11). Society certainly does not view these inabilities as neutral. The promotion of a healthy life style for pregnant women, the support of public and private research for disabilities, and the inaction of legislation (ADA) demonstrate a commitment by society to moral equality. The individual with the disability is viewed as so valuable to our society that significant resources are expended to provide equal opportunity. It is not the person who is devalued, nor their contribution to society, for surely society would not commit resources of time if that were the case. It is the disability that is devalued, not the individual.
At birth, infants become members of the moral community, but are not yet moral agents. Until the infant does become a moral agent, others must make decisions for her, decisions made from the standard of the child’s “best interest”. The Deaf community has advocated that they be included in the decision – making process to balance the parental hearing bias. There is legal precedent for third party intervention in proxy consent, and courts have intervened with a third-party disinterested person to help make decisions for non-competent individuals. However, the inclusion of a deaf adult, advocating for the deaf culture does not prima facie reflect an unbiased, “disinterested” third party. Certainly information regarding the Deaf culture should be made available to the family, including the ramifications of inclusion into the Deaf culture. It is difficult, however, to imagine the Deaf cultures’ interest should supplant or be given equal weight to the parent’s decision regarding their child. It is generally recognized that parental autonomy to make decisions for and to care for their child should be free from outside interference. This freedom satisfies the child and the parental need for family integrity, continuity, and physical well being. The inclusion of contrary philosophical position that would jeopardize these family needs is not generally prescribed in family decision making and should not be a mandatory obligation.
The Deaf community proudly identifies their communities as cohesive. These communities develop because human beings group with other individuals who are “like” them. The Deaf community is exclusive as there are only 700,000 potential members. The Deaf community readily admits that many deaf individuals do not intimately know their biologic parents or other members of their families because of the communication difficulties. They rightly claim that their needs, interests, and cultural heritage are not known or necessarily shared by their genetic families. As Harmon Smith says, we are deceiving ourselves if we think we can educate and inculcate a child into another culture (deaf), and ever expect for that child to return to her biologic parents (hearing) without serious consequences to the family bond (Smith, pg. 54). It is a decision at infancy to select a finite community that doesn’t contain the child’s biologic family. And since enclaves of deaf individuals are generally not present in small rural communities, participation in a deaf community necessitates moving to or being close to some urban environment. The inclusion and participation in a community of “like” individuals narrows the community options. Hearing people, even thought they may never be accepted as members of the Deaf community can learn sign language and communicate over cultural lines. Members of the Deaf community do not have the same cross-over option.
Employment opportunities have been expanded for deaf individuals due to federal legislation and the advent of computers. The range of potential vocations, however, will always be inherently limited. It is difficult, regardless of the accommodations, to imagine a deaf individual being part of a surgical team, or functioning as an air traffic controller. It is unknown at this time if a pre-lingual CI will allow an individual to participate in these and other professions that emphasis auditory-verbal skills. It is known, however, that not to implant will certainly exclude them and limit their employment opportunities from jobs and professions that require auditory-verbal skills.
Marriages or long term romantic relationships generally develop with persons from our communities. The ability to communicate effectively is considered an essential in the marriage relationship, and it is understandable that a culturally Deaf individual would select a partner competent in ASL. Additionally there is the question of offspring. Most genetic deafness is carried on a recessive gene. This means to increase the likelihood of delivering a born-deaf infant is to marry another deaf individual with the same recessive gene trait. Potential marriage or relationship partners are often selected because of a communication system and the desire for deaf children. Both seem to further narrow the child’s right to an open future.
HARMS OF CI
The Deaf community has voiced concerns regarding the destruction of the cochlea during the implantation procedure, prohibiting the use of technology developed in the future. The cochlea is not destroyed for further CI developed along the current paradigm. Furthermore, the FDA allows for implantation of only one ear at the present time. The contralateral ear is available when new surgical techniques or new technology evolve and require an intact cochlea. The incongruity of the Deaf culture’s concern regarding the destruction of the cochlea is apparent to many. If their concern is that CI will be so successful as to eliminate a culture, then the destruction of the cochlea is irrelevant. If their concern is that improved surgical techniques will be developed needing an intact cochlea, they deny their argument that Deafness does not need a “fix”.
The Deaf culture’s concern regarding ethnocide appears particularly morally problematic; each deaf child is considered a means to the culture’s ends, the survival of the culture, and not the child’s own end. Thus, the deaf child exists to fulfill the culture’s hopes and dreams, not necessarily the child’s hopes and dreams. If all deaf-born infants are implanted and choose the hearing world, then it will be the demise of a culture. However, the autonomy of the individual ethically trumps the autonomy of the group. If the group or the culture radically infringes on the choices available to the child as she grows up, then respect for the individual requires support for the child, even if the choice will eventually result in the death of a group or culture. Parenthood is a balancing act of parental dreams and hopes for children and the realization that children will someday exist for their own sake. The child will have her own talents, interests, strengths, and weaknesses. Regardless of the complex reasons for being a parent, a primary responsibility is to recognize the child as an end in herself. Parents best fulfill this responsibility by providing the child with the support, skill, and knowledge necessary to avail herself of many open opportunities and thus maximize her chances for self-fulfillment. Any parental decision that closes the child’s right to an open future is not regarding the child as an end in herself. The selection of a community, a marriage or life partner, or a vocation strictly or primarily because of a single trait is inherently limiting because the trait is used to substitute for the individual. Cochlear implants or any other medical, genetic, or surgical techniques that provide for a more open future are not only morally permissible, but are morally encouraged.
An exploration into the ethical implications of human genetic testing
Katherine Duthie, University of Victoria, Victoria BC, Canada
Abstract: Although scientists have developed tests which enable individuals to determine characteristics of their genetic make-up, no one has yet determined how this technology and the resulting information may be handled ethically. This paper addresses problems that arise when dealing with the exchange of the results of genetic tests within families and also those which occur when the information is in demand outside the family – particularly when it is of interest to employers and insurance companies. Individual autonomy, beneficence on the part of researchers, employers, insurers, and proxy decision makers, informed consent, and privacy are all issues that are frequently discussed. Aside from the lack of ethical protocols, there are currently no laws or infrastructure in place to protect the individual from the consequences of elucidating medical details of their genome. Until the ethics can be derived upon which enforceable rules can be set to regulate the use of personal genetic information, we must be careful in considering whether or not to maker our genetic status known.
Introduction: As technology becomes available, we are more and more able to learn about ourselves through knowledge of our genetic make-up. The information determined can be useful in correlating the occurrence of disease and disorders to specific genes or gene mutations. Individuals with a family history of disease with a known genetic correlation (e.g., Huntington’s chorea) may choose to determine whether they carry the allele for this illness in order to make life choices. Others may wish to determine if they are a carrier of an illness to see if, in combination with a heterozyogtic partner, they are likely to pass the disease to a child (as is possible with Cystic Fibrosis).
The question is, who should have access to the genetic information of others? When, if at all is this ethically appropriate or necessary? Through the analysis of case studies, this paper will address the ethics of the three following scenarios in the pursuit of the human genetic load: 1) accessing the genetic information of parents; 2) determining genetic make-up of offspring; 3) the occurrence and consequence of access to an individual’s genetic information by employers and insurance companies. Genetic testing and resulting information is fundamentally embedded in the context of health care and therefore will be discussed in terms of medical ethics.
Selecting a meta-ethical theory: Before we may engage in an ethically meaningful discussion we must first select an appropriate meta-ethical theory. There are three main theories from which to choose:
Ethical non-cognitivism: This theory is founded on the notion that we are all emotionally based beings who cannot come to an agreement or disagreement because differing opinions cannot be described as right or wrong (Kluge 1999a). Even when our logic is lacking, we may insist on our opinions because they ‘feel right’. This cannot account for situations where our emotional reactions are at odds with what is ethically correct. This stance is impossible to use because ethical decisions are not simply emotional assertions.
Ethical Relativism: This theory states that while ethical statements are cognitively meaningful, they do not hold in any objective state because they depend on our point of view (Kluge 1999a). Since all our judgments would be relative, we would never be able to have a disagreement with people of different perspectives Discussions would simply result in circuitous crossed-monologues. Our goal in discussing ethics is to develop solid foundations for ethical decision making applicable to all people, not simply those from one perspective.
Ethic objectivism: According to this theory, right and wrong are objective phenomena (Kluge 1999a). This allows us to make ethical judgments within the parameters of the situation regardless of the perspectives and emotions involved. We will adopt this ethical theory in our discussion of the ethics of access to genetic information.
Selecting an ethical approach: Within the realm of ethical objectivism, there are several ethical approaches which can be used. These include: Feminist ethics, Virtue ethics, Religiously oriented ethics, Agapistic ethics, Teleological ethics, and Deontological ethics. While there are arguments for all of these approaches, there are fundamental flaws in the context of healthcare and genetics in all but one. The two most common of this list are Teleological and Deontological ethics.
Teleological Approach: This approach focuses on outcomes rather than means to these outcomes. Utilitarianism falls into this category. This is based on the principle of utility which promotes actions resulting in the greatest amount of good for the greatest number of people (Kluge 1999a). There are two fundamental drawbacks to this method: 1) it does not define the nature of the good we are striving for and the bad we are trying to avoid; 2) it does not address the needs of the individual. The very nature of the subject at hand relates directly to individuals and consequences to them. To discuss this using the principle of utility is to deny these individuals ethical consideration which is the complete opposite of what we are trying to achieve.
Pluralistic Deontological Approach: This approach is based on the contention that there are several basic principles from which all judgments and rules of right and wrong must ultimately be derived (Kluge 1999). The following principles are widely accepted among pluralistic deontologists:
Principle of Autonomy and Respect for Persons: Everyone has a fundamental right to self-determination. This right is only limited by unjust infringement on the rights of others.
Principle of Impossibility: A right that cannot be fulfilled is ineffective as a right, and an obligation that cannot be met under the circumstances ceases to be effective as an obligation.
Principle of Fidelity or Best Action: Whoever has an obligation also has a duty to discharge that obligation in the best manner possible.
Principle of Equality and Justice: A right is effective to the degree that it preserves or promotes justice.
Principle of Beneficence: Everyone has a duty to maximize the good of others where the nature of the good is defined by the other persons themselves.
Principle of Non-Malfeasance: Everyone has a duty to minimize harm where the nature of the harm is defined by other persons themselves.
This ethical approach has proven to be most useful and effective when discussing issues relating to personal health. Using these principles, we will come to ethical decisions regarding the access to an individual’s genetic information.
Genetic access within a family – seeking parental information: Case #1: Mr. X, a forty-five year old man with a family history of colon cancer, participated in a colon cancer research study at Y University. This phase of study was aimed at determining whether there was a possible link between Z gene and an aggressive form of colon cancer. The preliminary results suggested that the Z gene was associated with a 10% increased risk of colon cancer. Mr. X did not learn whether he carried the gene and passed away from an untimely yet unrelated illness.
Shortly after Mr. X’s death, his son, Mr. W. approached Y University and asked to learn whether his father carried the Z gene. The son was engaged to be married and wanted to find out all of the information he could before making a commitment to his fianc?e. The University stated that the studies were preliminary and even if his father did have the gene, the risk factor would be even less for him because there was no guarantee he had inherited the gene from his father.
Though the son claimed to understand the relative significance of his father’s test results, he persisted and became increasingly stressed and irate at the University for refusing to provide the results to him.
This case brings up several ethical issues. The first deserving our attention is the issue of informed consent. Informed consent refers to the complete and appropriate disclosure to a subject or patient by the medical professional of the details and outcomes of a medical procedure or decision. To give informed consent allows the individual to decide what happens to their body thus maintaining their autonomy. When Mr. X volunteered to participate in this study, there was no indication that he assumed that anyone else would find out if he possessed the gene linked to colon cancer. Article 8.1 of the Draft Code of Ethical Conduct for Research Involving Humans states that in human genetic research, the genetics researcher must report the results to that individual. Article 8.2 goes on to say that the researchers and the Research Ethics Board (REB) presiding over the study must ensure that the results and records are protected from access by third parties unless consent is given by the participant. If we assume that the researchers at Y University adhered to this code, the onus was on Mr. X to divulge or consent to the release of any information to a third party. Mr. X did neither of these things. To disclose personal information about Mr. X to anyone (including family members) would be violating his autonomy and thus is unethical.
One may argue that Mr. X has no autonomy because he is deceased. It is true that when someone has participated in research and dies after, there are no legal obstacles to disclosing personal information because the deceased a) have no legal rights, and b) are not considered ‘research subjects’ under existing federal regulations (NHGRI).
Ethically, a dead being is no longer a person therefore we have no duty to them. However, individuals volunteer to participate in clinical studies with the assumption that their confidentiality does not come with an expiry date. If we allow for information to be released post-mortem, this may discourage participation in future research projects particularly those which involve potentially socially stigmatized subjects.
The Principle of Beneficence on behalf of the researcher is also brought into question by this case. This principle states that everyone has a duty to maximize the good as defined by the individual receiving said good. In healthcare this may translate into an obligation on the part of the genetic researcher to disclose genetic information about a subject to his family so that they may take appropriate actions to prevent harm to themselves. It would seem that this principle is in violation of the Principle of Autonomy. According to the President’s Commission for the study of Ethical Problems in Medicine and Biomedical and Behavioural Research, confidentiality could be overridden in certain cases where blood relatives were at risk of serious harm. In this case, the increased risk to Mr. X, if he did in fact carry the gene, was stated at approximately 10%. Because Mr. W only carries half of his father’s genome which itself, may or may not carry the cancer-causing gene, the actual increased risk for Mr. W is marginal to non-existent. Because there is no significant medical threat to Mr. W in either case, the researchers were not violating the Principle of Beneficence and thus Mr. X’s autonomy and confidentiality remain.
The Principle of Non-Malfeasance can be discussed similarly with the same result. In this case, the maximum possible risk to Mr. W is not such that inevitable harm will result if he is not made aware of his condition (or lack thereof). Again, Y University has no obligation do disclose the information to Mr. W.
Genetic access within a family – seeking information about our offspring: Genetic tests for offspring refer to prenatal screening, newborn genetic testing, and childhood genetic testing. Do we have the right to know our child’s genetic status? For the purposes of this essay we consider both screening and diagnostic tests as methods of accessing information.
Prenatal screening: Governing aims are to reduce the incidence of congenital abnormalities for which no treatment is available, and to produce information of use in the pre- and post-natal treatment or management of disorders (Robinson 1998). Methods of determining a diagnosis included amniocentesis, chorionic villus sampling, and fetal blood sampling. Currently pre-natal treatment prevails via therapeutic abortion. There are a number of issues to consider when looking at the ethics of pre-natal screening.
The autonomy of both the mother and the foetus both need addressing. A pregnant mother or couple ought not to be given carte blanche to make decisions where the principle beneficiary or victim is an unconsulted foetus. The Canadian Medical Association recommends that a human foetus becomes a person when “the foetal nervous system has developed to the point where it has the basic capacity for sapient cognitive awareness”(CMA 1991). This is reached at approximately twenty weeks gestation (Kluge 1999a). From this point on, the foetus is considered an incompetent individual. Its parents would naturally take on the proxy role in which case they are obligated to do what is best for their unborn child. Prior to twenty weeks, although the status of the foetus is a serious ethical consideration, as a non-person, its rights are not equal to those of the mother. Her right to autonomy and self determination take precedent.
The mother’s autonomy apart from the foetus must also be considered. Pre-natal screening conveys a recommendation to pregnant women that accepting the test is the responsible course of action and that a foetus identified as seriously affected should be aborted. Failure to comply with the standard screening program may be seen as irresponsible. Parents who have an affected child may be blamed for something they could have prevented (Clarke 1998). This sort of pressure could lead to informed consent under duress denying the mother an environment where a carefully weighed and considered decision could be made. This is a violation of her autonomy.
Prenatal screening tests also present issues of equality and justice. Cases have been documented where insurance companies have refused to pay for children with illnesses that could have been ‘prevented’ (through abortion) with prenatal screening (Billings et. al. 1992). There may also be a negative impact on individuals of society who have a condition that prenatal screening is designed to prevent. Overall, refusing to terminate the development of a seriously genetically affected child puts that child and her family at a disadvantage beyond the usual limitations of the illness. Ultimately, more questions than answers arise when addressing these concerns. Do parents then have a duty to a) undergo prenatal screening and b) abort a child who displays serious abnormalities?
A third consideration brings us down to the nitty-gritty reality when dealing with issues surround health care delivery – allocation of resources. The cost of avoiding a birth with Down’s syndrome through serum screening and termination is $56 000 (1992). The same study reports that the average cost of lifetime care for a Down’s sufferer is $280 000 (1992) (Robinson 1998). From a utilitarian point of view, we have an obligation to terminate pregnancies where aborting the infants with serious congenital abnormalities is cheaper than the cost of treating the illness after the child is born. This is regardless of whether or not their lives might be seen as worthwhile and whether or not they would entail physical suffering.
From the deontological perspective, approaching patient treatment from a purely financial perspective denies their personhood. This brings us back to the status of the foetus. Using the twenty week gestation mark of personhood, we could simply state that all abnormal pregnancies prior to twenty weeks should be aborted, yet all those detected after should be brought to term. This of course denies the gradient of severity seen in many abnormalities and also the consideration of quality of life for the infant after birth. Clearly we need to derive a more sophisticated ethical method in order to confidently and rationally come to an ethical decision making mechanism in this situation.
Newborn genetic testing: Currently in Canada, two compulsory screening programs are at work in our hospitals: The Guthrie test for phenylketonuria (PKU) and that for congenital hypothyroidism. In both of these illnesses, early diagnosis permits effective treatment of the condition. Because the benefits of screening infants for these disorders are so great, many such programs have been implemented without an explanation or information given to the parents. Parents are often unaware for what conditions their infants are being screened.
It may be argued that the obvious benefits of the test to the infant override any need for parental consent. Although parents would be irresponsible not to have the tests completed, to allow the hospital to decide in which instances parents had a choice and when they did not would set a dangerous precedent. This sort of attitude violates the fiduciary agreement necessary between doctor and patient. The paternalistic doctor patient relationship assumes that doctor always knows best thus denying the patient’s autonomy in the decision making process. Hospitals that screen newborns without seeking consent from the child’s proxy (the parents) are not only acting unethically, but also illegally in that nonconsensual physical interference is assault and battery.
Whether or not genetic screening is to the advantage of the child, consent is always necessary either from the parent or proxy except under emergency conditions. This raises the question, what do we do when parents refuse to allow this screening? In such a situation, the physician should proceed on the assumption that the child’s sensible experience and qualitative perceptions are like those of an adult. It is then appropriate for the physician to take into account the child’s subjective expressions and balance them against the objective standard of what a reasonable person would decide when considering the proxy decision. If the physician finds that the proxy decision maker has introduced his/her non-standard values in making the decision, the physician must challenge the decision. The courts may ultimately decide the course of action (Kluge 1999b).
In the case of newborn screening, the benefits are so great at so little cost that it is extremely likely that if a parent refused consent, the courts would order it regardless. The point of informed consent remains important however, because to pick and choose which situations the fiduciary agreement applies and when it does not, may lead to unethical decision making in the future.
Childhood genetic testing: There are many issues that arise when considering childhood genetic testing depending on the nature of the test being discussed. We must first ask ourselves, do parents have a right to access the results of their child’s genetic tests or even to have them tested in the first place?
Some parents have the “my child, my business!” attitude with respect to this question. This is not the case. A parent does not have complete access to their child’s genetic information simply by virtue that they are the child’s parent. In some cases, this would be in violation of the child’s autonomy. However, there are circumstances where parents do have this right. As proxy decision makers for an incompetent child, it is in the best interests of the child that her parents have access to the results of diagnostic tests/screenings to ensure that properly informed medical decisions are made.
This brings us to the issue of competency of the child. In the past, children were assumed to be incompetent simply because they were children. This is in violation of section 15 of the Charter of Rights and Freedoms which prohibits discrimination on the basis of age. If a child is deemed competent, they are under no obligation to reveal their medical status to their parents and their physicians have a duty to preserve the child’s autonomy through keeping all medical information confidential. There are two other sorts of genetic tests which lie outside the immediate medical context where this may be relevant: late onset diseases with possibilities for treatment and late onset where no presymptomatic treatment is available.
If a child is at risk of developing a late onset disorder and immediate treatment is available, the ethical role of parents is the same as when immediate medical diagnostic tests are being completed. To test an incompetent child for a late-onset disease where no presymptomatic treatment is available removes the child’s future right as an autonomous adult to make their own testing decisions. Also, the confidentiality that would be automatic for an adult undergoing testing would be removed. Both of these things are in violation of the child’s autonomy and are therefore unethical. If a competent child takes the lead in requesting this sort of genetic test, loss of the child’s future autonomy is not an issue and testing can proceed as normal.
Genetic access by employers or insurance companies: Case study #2: The ABC Genetics Testing Corporation (ABC) has developed a test to identify two gene mutations associated with breast cancer. They are BRCA1 and BRCA2 found on the long end of chromosome 17 and chromosome 13 respectively (Stanford 1998). Although the figures are in some dispute, it appears that the possibility of contracting breast cancer before the age of sixty increases by 70-85% in women carrying both of these mutations.
ABC already markets the gene test to the public. MicroHard, a leading computer software manufacturer employs nationwide over 10 000 women between the ages of 25 and 60. MicroHard proposes to have every female employee take the ABC gene test at its expense. MicroHard hopes that the use of the test will enable its female employees to have a better understanding of breast cancer and to take appropriate responses, including more frequent physical examinations and more aggressive treatment of any indications of potential cancer. MicroHard also believes that if environment contributes to the onset of cancer, female employees can modify their behaviour to reduce environmental risks such as modifying diet and avoiding sources of radon. While MicroHard is concerned about the physical well-being of its employees, if frankly admits that if it could lower the incidence of breast cancer, it would lower its medical costs. MicroHard is a self-insurer meaning that it pays its employees’ medical expenses and does not use a third party insurer.
The first ethical question that springs to mind is how the autonomy of the employees would be preserved if these tests were to take place. The answer is, it would not. To seek this sort of information from an individual without her competent informed consent would be a direct violation of her privacy and confidentiality. In this situation, the competency of the employee may be compromised due to fears of being ostracized by management or even losing her job if she does not consent to the test.
Before we discuss further ethical implications here, it would be helpful to determine MicroHard’s true motive behind this venture. It could be argued that MicroHard truly wants the best for their female employees and is just looking out for their health and well-being irrespective of financial issues. If the tests will serve only to ‘inform’ the employee and allow her to use the information to make lifestyle changes so as to minimize the risk of developing breast cancer, to ensure their employee’s autonomy MicroHard could do two things.
Pay for the tests but maintain the confidentiality of the employees by never seeking the results themselves. This would allow the women to use the information if they so chose.
Forget the test altogether and spend the money informing all employees (men and women) of cancer-preventing lifestyle choices, the importance of self examination and frequent check-ups. This route would avoid the ethical issues of consenting to the test and those of the company having access to this type of knowledge.
MicroHard did not select either of these routes which leads us to believe that Micro Hard’s true motive is to minimize cost. Certainly helping their at-risk employees avoid cancer would achieve this goal. But wouldn’t they save even more money if they reduced their number of at-risk employees? To fire someone simply based simply on their genotype is genetic discrimination and is certainly a violation of the Principle of Equality and Justice.
Genetic discrimination refers to discrimination directed against an individual or family based solely on an apparent or perceived genetic variation from the ‘normal’ human genotype. If MicroHard decided to use the genetic information of its employees when making hiring/promoting/firing decisions it would be guilty of this ethical infraction. If this did occur, Micro Hard would certainly not be the first company/institution to do so.
In such a case, a man was denied a job with the government (U.S.) because he was a carrier of Gaucher Disease (Billings et. al. 1992). Insurance companies in the US are also guilty of this discrimination (see Appendix A for reported cases of genetic discrimination). In many of these cases, decisions regarding allocations of health, life, and automobile insurance were based solely on a diagnostic label without regard to the severity of the condition for each individual. In these and other cases, having a particular genotype is equated with the presence of a severe illness and the lack of effective treatments. This demonstrates a lack of understanding of the concepts of incomplete genetic penetrance, variable expressivity, and genetic heterogeneity. In many cases, the worst possible scenario seems to be the standard used for policy decisions regarding at risk individuals. An individual may suffer severe consequences as a result of this inaccurate and unfair simplification of genetic conditions (Billings et. al. 1992).
Because MicroHard is in effect, both an employer and an insurer, they have twice the interest in the genetic health of their employees. While both companies and private insurers focus on increased production at lower cost, to attain these goals at the cost of the basic rights of their employees is ethically questionable and could lead to yet another stratification in our social structure: a class of individuals unable to obtain employment or insurance.
Access to Genetic information – Conclusions: There is no doubt that the new technologies in medical genetics offer many advantages and improvements to the way we address our present and future health. As individuals, we have the ability to gain knowledge about our genetic health and the power to act with this information in any way we choose. Our case studies have shown that we do not, as individuals or companies, ethically have free access to such information of others. Even as parents, our only power over our children’s genetic information lies where we must act as we assume they would in medical decision making situations.
Although individually we may do what we please with the knowledge of our own genetic status, legally we still have no power over who else has access to our information. Currently in Canada, there are no laws regulating the use of genetic information, and there are no enforceable mechanisms regulating who may see these results. We may assume that our records are confidential, and ethically they should be, however, we must accept that this cannot be guaranteed. In the US this is a particular concern where insurance companies and some employers routinely access medical records where this information would lie. Ethics aside, until laws and infrastructure are in place, we must be careful in considering whether or not to make our genetic status known, even to ourselves.
1. Billings, P.R., Kohn, M.A., Cuevas, M., Beckwith, J., Alper, J., Natowicz, M. 1992. Discrimination as a Consequence of Genetic Testing. American Journal of Human Genetics. 50:476-482
2. Clarke, A. 1998 ‘Genetic Screening and Counseling’ pp.215-228. A Companion to Bioethics. Editors: Kuhse, H., Singer, P. Blackwell Publishers. UK
3. Canadian Medical Association, Committee on Ethics. 1991 ‘The Status of the Human Foetus’ pp. 288-300. Readings in Biomedical Ethics: A Canadian Perspective. Editor: Kluge, E.H.W. Prentice-Hall Canada Inc. Ontario
4. Draft Code of Ethical Conduct for Research Involving Humans 1999 pp.244-251. Readings in Biomedical Ethics: A Canadian Perspective. Editor: Kluge, E.H.W. Prentice-Hall Canada Inc. Ontario
5. ELSI – Human Genome Project. 2000. http://www.lbl.gov/Education/ELSI/Frames/privacy-prying-f.html
6. Kluge, E.H.W. (A) 1999. Readings in Biomedical Ethics: A Canadian Perspective. Prentice-Hall Canada Inc. Ontario
7. Kluge, E.H.W. (B) 1999 ‘After “Eve”: Whither Proxy Decision Making?’ pp.187-195. Reading in Biomedical Ethics: A Canadian Perspective. Editor: Kluge, E.H.W. Prentice-Hall Canada Inc. Ontario
8. National Human Genome Research Insititute. 2000. GenEthics Consortium Case Literature: http://www.nhgri.nih.gov:80/About_NHGRI/Dir/Ethics/who.html
9. Robinson, P. 1998 ‘Prenatal screening, sex selection, and cloning’ pp.173-189. A Companion to Bioethics. Editors: Kuhse, H., Singer, P. Blackwell Publishers. UK
10. Stanford University Program in Genomics, Ethics and Society. 1998. Report of the Working Group on Genetic Testing for Breast Cancer Susceptibility. http://www.stanford.edu/dept/scbe/brcaexec.htm#Part1
Appendix A: Cases of Genetic Discrimination by Employers and Insurers
1. A physician reported: “‘an individual was found to have Gaucher Disease. His brother was screened and the results were consistent with unaffected carrier status (heterozygote). The brother applied for a governmental job and included the history of testing in the application. He was denied the job because of his being a ‘carrier, like sickle cell’ ” (Billings et. al.1992)
2. A mother tells of her daughter: “My daughter was denied employment by a company
because she has CMT even though the case is not really noticeable. She had indicated
on her form that she had CMT and the examiner ask her what it stood for; then, he looked it up in a medical book and denied her a job which had been offered to her
by the recruiter.” (Billings et. al 1992.)
3. Man from a family with hereditary hemochromatosis wrote: ‘In 1973, at age 27 and 1/2, I was diagnosed as having excessive iron storage and was put on a regime of
phlebotomies… After several years I have never had the slightest symptom in part
because early detection (and appropriate treatment) of iron overload in my case
avoided damage…. After failing to get insurance because of my hemochromatosis I have
supplied doctor’s testimonies to no avail. I might as well have AIDS. Event though
I have proven that I prevented health problems by early detection and prophylaxis,
they condemn me to the same category as lost causes. I run 10 Km races etc.
I am not a basket case and will not be one, ever, because of iron overload (Billings et. al. 1992).
4. An 8 year old girl was diagnosed as having PKU at 14 days of age through the newborn screening program…. A low phenylalanine diet was instituted at that time.. Growth and development have been completely normal. Height, weight, and head circumferences all follow the 25th percentile . Routine developmental assessments done at 26 weeks, 53 weeks, 54 months revealed skills solidly appropriate for her age, and in many instances, skills were above age-expected levels. The child continues to be developmentally normal and be healthy. The circumstances of the discrimination that this child has experienced
involve rejection for medical insurance. She was covered by the company that provided group insurance for her father’s previous employer. However, when he changed jobs recently, he was told that his daughter was considered to be a high risk patient because of he diagnosis, and therefore ineligible for insurance coverage under their group plan. She is currently being covered at the expense of her family (Billings et. al. 1992).
5. A women with Charcot-Marie-Tooth (CMT), a nonfatal, clinically variable, and genetically heterogeneous neuromuscular condition wrote:’ I have been rejected for life insurance many times, but only once was CMT cited explicitly as the reason. I appealed, informing the insurance company that people do not die from CMT and that they had declared me automatically eligible for accidental death insurance – the one risk that can be assumed might be greater for people with CMT. The insurance company’s reply repeated the statement that CMT is the reason for rejecting my application (Billings et. al. 1992).
6. Another woman wrote: ‘my husband has CMT. We have just been turned down for automobile insurance because of his disease. I have just recently sent them a letter from my husband’s doctor. I have also explained that my husband is a far better driver than anyone I know … My husband has had NO accidents, or traffic violations since he has been driving since the age of seventeen (20 yrs) (Billings et. al. 1992).
Russell T. Daley, Graduate Student, California State University, Long Beach
December 13, 2000
presented to: Institute for Applied and Professional Ethics
April 28, 2001
“This research is of such fundamental importance that all responsible citizens should be aware of its implications.
óDr. Shirley J. Wright, Ph.D., Assistant Professor of Biology, University of Dayton:
Biomedical sciences are progressing at staggering rate. This fact is no more evident than in the burgeoning field of stem cell research where therapeutic applications such as tissue and organ transplantation are being developed. These therapies have the potential to save millions of lives and greatly reduce human suffering. The ethical dilemma lies in the fact that much of the research requires the destruction of human embryos. Unfortunately, when faced with such choices, our standard ethical frameworks seem to demand opposing and intractable positions. The goal of this paper is to find a common ground from which we as a society may reasonably and faithfully deliberate about embryonic stem (ES) cell research. In the paper I will (1) identify and evaluate the main arguments both for and against this research, (2) explore the central question of moral status, (3) consider the application of Mary Anne Warren’s “multi-criterial” approach to the moral status of the embryo, and (4) offer some initial policy recommendations.
In order to arrive at any conclusions which hold the hope of widespread support, the nature of this discussion requires a careful accounting of disparate views and a respectful handling of the sometimes emotionally charged responses. Sadly the current public debate on this topic has become more of a political process than a philosophical one. Notwithstanding the valiant efforts of some of the best minds in our country and abroad, as represented in the National Institute of Health (NIH), the President’s National Bioethics Advisory Commission (NBAC), and the Senate Appropriations Committee (SAC) Hearings, the ethical divide seems unbridgeable. While the NBAC’s reportto President Clinton is complex in its recommendations and subtle in its reasoning, I believe the NBAC stops short of providing clear direction for the future. Not only does the NBAC offer an incomplete defense of its position, but in some respects it seems to have fallen prey to the political process and not offered recommendations which are true to the hearts and minds of the participants. This deficiency reflects the difficulty suggested by Kevin Wildes, “…of creating ethically sensitive public policy in a society that is secular and morally pluralistic.” Based on this challenge, it must be accepted that no matter what decision is made some persons will not agree. We should recognize in this process that not all religious or philosophical values will be realized in a pluralistic society. Rawls says, “There is no social world without loss: that is, no social world that does not exclude some ways of life that realize in special ways certain fundamental values.”
BREAKING THE STALEMATE
It should be recognized that much of the recent debate over ES cell research has focused on the use of ES cells collected from cadaveric fetal tissue and unused IVF embryos. Attempts by philosophers, lawyers, and scientists alike to justify ES cell research have centered on issues such as lack of complicity with abortion or the best use of unwanted materials. However, these attempts have not answered the critics of ES cell research and have left us in an ethical stalemate. John Robertson and the NBAC stop their arguments at the point of “non-complicity” because they believe that they have justified the immediate concerns of this research and answered the critics. They choose to address only the “less problematic”sources for ES cell research, however, in doing so they avoid the deeper debate and fail to set a direction for the future. How can we bridge the divide? First, we must seek to reduce some of the distorting power of the fears and prejudices that surround this debate. This can be done by gaining a common understanding and usage of such terms as “human being,” “person,” “right to life,” and even “embryo.” I contend that these terms can be sorted out within the context of a framework for moral status and our answers to the ethical dilemma presented by ES cell research will turn on the question of how we ought to understand the moral status of the embryo. Thus, I intend to focus my attention on the deeper problem: What is the moral status of the embryo, and how is it to be weighed against other relevant concerns?
THE STANDARD ARGUMENTS ON BOTH SIDES
The main argument for ES cell research is that it will reduce human suffering and promote human well being, or the common good, by curing or eliminating many illnesses. The debilitating effects of such diseases as diabetes, Parkinson’s, and Alzheimers (to mention only a few) may potentially be eradicated through the therapeutic applications offered by ES cell research. ES cell research is touted by many to be the most probable and quickest way to attain these therapies due to the undifferentiated nature of the stem cells as well as the ability of ES cells to overcome immunological concerns. Thus, it is research with ES cells versus adult cells which should be pursued. Any harms caused by the destruction of human embryos will be outweighed by the goods attained in the relief of human suffering. However, social utility is not always a sufficient grounding to justify actions. Except for hard-line, classical utilitarians, most agree that there are some moral constraints on the promotion of the common good. Issues such as justice, human rights, or respect for persons often mitigate social utility.
The main argument against ES cell research is that embryos should never be destroyed based on the principle of respect for life. Upon conception embryos are alive and have the unequivocal right to maintain that life. Whether one is using “left-over” IVF embryos ready to be discarded or the fetal tissue remains from elective abortions, any intentional destruction of an embryo cannot be justified. In effect, those arguing against ES cell research are saying that embryos have the moral status of persons and so should not be killed regardless of the extent of human benefit. As Richard Salzman says, “some diseases are better than the cure.” There is some truth in that statement. But even for objectors to ES cell research it does seem that closely held values are at times over-ridden in the name of other closely held values. As regards valuing life, we certainly risk life in the pursuit of ending human rights atrocities. So the question is how much truth is there in Salzman’s statement and how does this notion relate to the question of the limits on ES cell research.
An additional question which must be addressed in evaluating the argument against ES cell research is what is meant by “Respect for life.” This principle is best understood as one which values life among other values. This is, however, not the vein in which the opponents of ES cell research are using this principle. When they invoke “respect for life” in their argument, they are really meaning “sanctity of life” which is a principle holding life as the highest value, in fact, as a sacred and non-violable value. The pitfalls of this type of move will become more evident in the next section as we look closer at approaches to moral status.
Arguing against ES cell research, some suggest that it is incomprehensible to be able to offer the embryo “profound respect or dignity” and then be prepared to kill it. This question of respect for the embryo is an important one to address if we hope to find common ground in this debate. How much respect is due the embryo? If the embryo is due respect, how can we most appropriately demonstrate this? I believe a clear understanding of the embryo’s moral status will help us answer these questions and help us face the dilemma of offering the embryo respect while still being willing to destroy it.
IS THE EMBRYO PERSON, PROPERTY, OR SOMETHING ELSE?
The notion of moral status represents an approach of specifying those things towards which we believe we have moral obligations and identifying some of what we believe those obligations to be. Any theory of moral status cannot be expected to answer all relevant questions about obligations since many of our obligations are based on contributing factors which are situational or contextual. However, a theory of moral status that can be accepted and agreed upon by a diverse audience will take us a long way towards practical decision making.
Relative to the moral status of the human embryo there three positions of which two are commonly held and one is somewhat revisionist:
Embryo as property
It has no moral status, so allow any type of stem cell research
Embryo as person
It has full moral status, so allow no stem cell research
Embryo as transient
It has some moral status, so allow stem cell research under certain conditions
The embryo as property view, can only be held if no moral status is attributed to the embryo. The most obvious avenue to reaching this view is one that Singer or Hare might take within a preference satisfaction utilitarian framework. Here the claim would be that since the embryo has no preferences or interests, it has no claim to moral status. However, our common-sense tells us that there is something about the embryo which instills it with value. This is not to say we must resort to speciesism (following Singer, i.e., it is not the specifically human quality of the embryo that makes it worthy of some degree of protection), but that there seems some incongruity in dealing with human beings purely as if their rights were dependent upon a scientific account of their developmental stage (e.g., passing the eight cell stage, developing the primitive streak, etc.). In fact opponents of ES cell research draw our attention to our disposition to protect the vulnerable who may not yet have developed. The embryo seems both developing and vulnerable. Singer says it is not vulnerable because no harm can be done to it. But the harms many are concerned with are the harms to justice and human rights which a strict utilitarianism seems unable to account for. One of the greatest advantages of the account of moral status I plan to offer is its ability to take a fundamental preference satisfying ethical framework and still compensate for fundamental human rights.
This type of approach, using a single criterion as the basis for establishing moral status, is called “uni-criterial” by Mary Anne Warren in her book Moral Status: Obligations to Persons and Other Living Things. The embryo as person view can also be classified in this manner as it likewise relies on a strict adherence to a uni-criterial notion of moral status. The approach taken in the embryo as person view is that since the embryo is alive, and life is the singular necessary and sufficient condition for the attribution of moral status, then the embryo has full moral status. Warren skillfully maps out the standard “uni-criterial” approaches to moral status and the pitfalls of each. Warren discusses three uni-criterial approaches, each of which focuses on a certain intrinsic property: (1) life, (2) sentience, and (3) personhood. Many philosophers have argued for one or another of these properties to be necessary and sufficient for the attribution of full moral status. Warren argues that each represents a notion which is sufficient for some moral status, but will fail as a sole criterion for full moral status. She argues persuasively that taken individually each, “?leads to consequences that are intuitively implausible and pragmatically unacceptable.” I will briefly examine some of these consequences and illustrate the problem of a uni-criterial approach as I examine a recent statement against ES cell research by a prominent advocacy group.
AN ARGUMENT AGAINST ES CELL RESEARCH
The Concerned Women for America (CWA) make a standard argument against embryonic stem cell research:
“Human embryos are humans – and therefore, persons – and when an embryo is destroyed, a human life is extinguished? The underlying utilitarian belief that some humans need to be sacrificed for the betterment of others is morally and ethically wrong. The rationale used to justify the destruction of embryos for the advancements in medical research and development is the same used to justify the syphilis experiments conducted on African-Americans in Tuskeegee, Alabama? (and in the) medical research Nazi doctors performed in Dachau and Auschwitz.? We do not have the license to engage in lethal experimentation, just as we may not experiment on death row prisoners or harvest their organs without their consent.”
As Peter Singer points out,
“The syllogism goes like this:
Every human being has a right to life.
A human embryo is a human being.
The inadequacy of the standard argument is brought to light in a comparison of the nature of the term “human being” and its use in each of the two premises of the standard argument against ES cell research. To make the argument hold, the sense of “human being” as used in the first premise is not the same as the sense of “human being” as used in the second premise. Singer calls this an equivocation of the argument’s primary term. The use of the term “human being” in the second premise is biological in nature (it has human DNA, it is of Homo Sapiens), the use of the term “human being” in the first premise (to claim a “right to life”) is strictly relative to the moral qualities and is, thus, normative in nature. Therefore, the standard argument fails due to the equivocation of the term “human being.” In getting clear about our use of the terms “human being” and “person” we can create clarity amid unwitting attempts at obfuscation.
Many philosophers, as far back as Locke, would claim that a human being has rights, but that being human is not a necessary and sufficient condition for having personhood. Being human is a biological condition, being a human being or, more to use more exacting language, having personhood is a normative condition. The questions then becomes: What are the necessary and sufficient conditions for moral status and how do they apply to the human embryo? I will address these questions in the subsequent sections of this paper.
BIOLOGY NOT UNIMPORTANT
Within this debate on ES cell research, a great deal of time and energy is spent among scientists and philosophers debating the biological issues of the embryo such as numerical continutiy and many arguments are made both for and against designating the embryo as a person in the name of science. While I suggest that the issues which will aid our progression to consensus on this topic do not lie in biology, science can aid our normative attribution of moral status for the embryo. Some ES cell research proponents, including myself, use scientific information to suggest that it is appropriate to wait until at least fourteen days after conception to claim numerical continuity, since it is only then that totipotency has been lost. Additionally, it is only sometime after fourteen days from conception that the development of the primitive streak (which marks the development of neural receptors) signals the development of any potential for sentience. It is at this point of establishing identity and sentience (qualities we believe to be important on a developmental view of the embryo) that I suggest we should become more concerned with the embryo’s interests and rights. This is a position which I believe is tenable, but we should acknowledge that it is a normative decision we are making and not a scientific decision. Furthermore, if we are to hold such a position, we must be clear as to how sentience and its attainment effect our attributions of moral status. I will address these issues in the next section.
If the embryo is not property and the embryo is not a person, then it must be something else. What this “something else” is can be reflected in the position of the embryo as transient (Position #3 above). The validity of this position will be born out in a review and application of Warren’s multi-criterial approach to moral status. To understand this approach, we must understand how she establishes each level of her criteria for moral status and why any one of the three standard intrinsic properties fail as the singular criterion for establishing moral status. It is important to note that Warren acknowledges that this approach is a common-sense morality. While not all of these principles are used consciously by everyone, she contends that “thoughtful people”will make reasoned arguments that are supported by these principles. She admits that, “None of these principles is deducible from empirical facts, or from analytic truths about moral terms or concepts; yet each is defensible in common-sense ways.”
To begin with, Warren recognizes that we do value life and she acknowledges the merits of the “Sanctity of Life” principle. The notion of “reverence for life” or “Sanctity of Life” (as the principle is more often called) as the sole conferring principle of moral status was purported by Albert Schweitzer. While he was recognized as a great humanitarian, the legacy he left behind in the dogmatic appeal to “reverence for life” represents much of the intractability found within the stem cell debate. The key to the “reverence for life” notion is that all living organisms have moral status and have it in exactly the same amount. This is because life is the ultimate, absolute value which all organisms share equally. However, application of this strict and absolute principle quickly wanes to absurdity when we realize that many of our normal daily functions cannot occur without some destruction of life; e.g., cleaning the kitchen floor results in the wrongful killing of micro-organisms, our daily diets (even if vegetarian) result in the morally unacceptable death of plants.
While some (including the Concerned Women for America) have tried to re-shape the Sanctity of Life principle by saying it is only relevant to human life, those seeking to hold this general principle of life as ultimate and absolute have some vicious obstacles to overcome. In order to be true to the sanctity of life principle, one may be forced to accept that any attempt to make such qualifications as only human life matters could result in the untenable outcome of allowing other qualifications. Thus, one objection to such a qualifier is that to allow only human life to be absolute causes us to allow the principle to be denigrated such that some life is not worth living. Though this is just the point of the CWA and others, the problem is that this could be the case whether the living creature is an animal, a child, an elderly person, or a disabled person. Such denigration of the value of life is unacceptable even to the proponents of the Sanctity of Life principle. As Schweitzer claims, there can be no qualifiers to the type of life we are talking about. Another problem with this is the charge, made by Singer, of speciesism (referenced above). Fundamentally, the objection is that it seems problematic as humans to claim our humanness as the qualifier to attain full moral status. It is common for people hold that animals have some rights and those rights are defined by the nature of our obligations which are based on some level of moral status. Thus, the sanctity of human life as a uni-criterial principle is not a sufficient ground for establishing either partial or full moral status.
In Schweitzer’s view any actions that harm living things are wrong. Warren recognizes the value in this notion and converts the Sanctity of Life principle to her first of seven principles which she calls “Respect for Life.” “Life” is a sufficient condition for some moral status, but is not a sufficient condition for full moral status. Thus, all living entities are given some moral status, but not full moral status. This principle treats all harms done to living things as undesirable, other things being equal, and imputes no wrongdoing to those who harm living things when there are morally sound reasons for doing so. However, Warren recognizes, as do some Sanctity of Life proponents, that no right is absolute and that the right to life can be overridden with sufficient justification. This notion re-iterates problem with the uni-criterial Sanctity of Life position in that such justifications (i.e., when to override a right to life) cannot be determined solely on the attribution of life, since all life is valued equally. Such determinations, Warren claims, can only be achieved within the context of the full compliment of the “multi-criterial” principles.
Next, Warren analyzes the principle of sentience as a uni-criterial approach to moral status. To do this, Warren launches an attack on one of her own mentors, Peter Singer, himself a preference utilitarian. Singer’s ethics rely upon the sole criterion of sentience for gaining full moral status. However, Warren effectively demonstrates how this notion of sentience is unacceptable as the singular criterion in the establishment of moral status. Of the four objections to this approach that Warren explicates, the most compelling to me is what she calls the “Human Rights Objection.” Fundamentally, this objection is that the sentience view on moral status provides no basis for ascribing strong moral rights to individual human beings, or even animals. “The charge,” says Warren, “is that utilitarianism regards individual beings as mere ‘receptacles’ for utility; if a greater quantity of utility can be produced by sacrificing some individuals for the benefit of others, then there is no utilitarian objection to doing this.” However, rights are considered by many to override utilitarian considerations. Warren quotes Ronald Dworkin, “If someone has the right to something, then it is wrong?to deny him even though it would be in the general interest to do so.” Singer doubts that this is a problem for his preference satisfying notion of utilitarianism. He contends that, “?the only right his theory attributes to (humans and) animals is the right to equal consideration of comparable interests.”
Warren converts Singer’s principle of sentience into the second of her interrelated concepts and calls it the “Anti-Cruelty Principle.” Sentience becomes sufficient for some moral status, but not sufficient for full moral status. She states that, “Sentient beings are not to be killed or subjected to pain or suffering, unless there is no other feasible way of furthering goals that are consistent (with all the other principles) and important to human beings or other entities that have a stronger moral status than can be based on sentience alone.” This principle supports our instinctive capacity for empathy. If we view our own pain as objectively bad, then logical consistency requires that we apply this principle to others.
“Personhood” is the third uni-criterial, intrinsic principle debunked by Warren. She makes the distinction between, “(1) the ‘maximalist’ definitions of personhood which makes moral agency(or at least potential for it) a necessary condition for being a person; and (2) the ‘minimalist’ definitions which do not require moral agency, but only some capacity for thought and self-awareness.” Kant’s view of personhood is that of the “maximalist.” The obvious objection to this is that we have already established that the mere existence of sentience makes one worthy of some moral status. Even John Rawls, who attempts to defend Kant’s “maximalist” definition, rejects personhood as a necessary condition for having moral rights and holds only that it is sufficient. Kant’s notion of personhood restricts the moral community to eliminate sentient beings without moral agency; an action many animal rights and disability rights activists are sure question. Warren, however, rescues the principle of “personhood” with her third and fourth principles: the “Agent’s Rights Principle” and the “Human Rights Principle.” The former holds that moral agents have full and equal basic moral rights, including the rights to life and liberty. The latter holds that within the limits of their own capacities, human beings who are capable of sentience but not of moral agency have the same moral rights as do moral agents.
I believe these last moves by Warren offer a methodology with which a utilitarian framework can be created. Since I take utilitarianism to be a most understandable, practical, and defensible position, I encountered Warren’s work with great pleasure. The greatest objection I have always had towards utilitarianism has been its inability to account for human rights. But how, you may ask, can a utilitarian model account for moral rights such as liberty, justice, and equality when practical necessity dictates otherwise or the expected gain in the greatest happiness is sacrificed? Warren’s answer is that this is done based on a utilitarian argument that the “Agent’s Rights” principle has long-term social value and good. Thus, there are utilitarian reasons for adopting a non-classical utilitarian principle.
It must be remembered that moral rights are not absolute in that they may be overridden at times. Take self-defense or war as examples. We may adamantly support a “reverence for life,” but allow an action which causes the death of another. Most holders of the Sanctity of Life principle will hold that killing an intruder to save one’s husband, daughter, or one’s self is somehow morally permissible. Whatever the justification is, it is still a justification to override the principle. Likewise, I have rarely heard the “right to life” contingent standing up against military involvement to end such atrocities as ethnic cleansing. Interestingly, proponents of “reverence for life” (or “Sanctity of Life”) as a uni-criterial principle, are resistant to the generalizing of these applications to a formal theory. Thankfully, Warren is not so resistant. She says the key is that, “the precise content of any moral right can only be delineated through discussion and deliberation, in which all legitimate interests receive equitable consideration.”
Building upon her theory, Warren borrows from such figures as the environmental ethicist, J. Baird Callicott and feminist ethicist, Nel Noddings, to introduce two relational rather than intrinsic properties: (1) membership within the social or biotic community, and (2) emotional connectedness. Warren then captures these two relational properties which she believes are important to moral status in her three remaining principles.
“5. The Ecological Principle: Living things that are not moral agents, but that are important to the ecosystems of which they are a part have?a stronger moral status than could be based upon their intrinsic properties alone”(e.g., species and habitats).
She notes that none of these relational principles can diminish the moral status gained through the employment of any of the preceding, intrinsic principles, but that they can enhance moral status. She holds that neither of these two relational properties represent a necessary and sufficient basis for moral status, but that the theories which value these properties contain insights that need to be incorporated into an adequate account of moral status. This adequate account, therefore, will be “multi-criterial.”
In the application of this “multi-criterial” approach to moral status, Warren cautions us that the first four principles represent only moral floors, not ceilings on moral status. Furthermore, a complete and accurate understanding of moral status cannot be gained until a complete review of all the interrelated principles are balanced against one another and the practical implications of each are considered. In applying this model to our topic of ES cell research and the proposed destruction of early embryos (this is the name I will use for embryos prior to the fourteenth day after conception), a full accounting of each of Warren’s principles is enlightening and empowering.
Clearly early embryos are endowed with life and, therefore, deserve respect and some level of moral status. Nevertheless, these early embryos do not have either the capacity for sentience or moral agency. So they cannot be considered to have full moral status. The failure by many in this debate, including Singer, is the failure to ascribe some moral status or moral value to the early embryo. Even if the early embryo does not have full moral status, it certainly should have some moral status based on its attribute of being alive. This status, however, is not for “itself” in the Kantian sense, nor merely for instrumental value, but for the intrinsic value of the abstract notion of “life.” John Robertson calls this value the “symbolic” value of life. This missing distinction, Robertson says, between the “intrinsic and the symbolic valuation of the embryo is at the heart of the debate over abortion and embryo research.” While Steinbock calls this missing distinction one between “moral status” and “moral value”, Warren has done justice to both perspectives and perhaps has employed a more broadly appealing language.
The “Respect for Life” principle calls us to value and sustain all life, other things being equal. However, in the case of ES cell research and its potential therapeutic applications, other things are not equal. The symbolic cost associated to allowing the destruction of human embryos in ES cell research is primarily the undesirable capacity to diffuse or obscure the value we hold in this intrinsic property of life. The intrinsic costs associated to not allowing the destruction of early embryos in ES cell research at minimum are that millions of persons with full moral status will die and even more will suffer significant physical and psychological pain. This expansive claim can be made because o other means currently exists, or will exist, in the foreseeable future which can alleviate the suffering and death that ES cell therapies have the proven capacity to do. Thus, the benefits of ES cell research far outweigh the symbolic costs incurred from the destruction of life that is without full moral status. The key here is that this “symbolic value” and the interests of those with this “lower moral status” should not take precedence over the interests of those with full moral status, i.e., those gaining higher levels of moral status based on the principles of Anti-Cruelty and Agent’s Rights or Human Rights.
Within the Interspecific Principle, embryos may gain a higher level of moral status based on their social relationship to human beings, but only if such relationships exist. If research embryos are created through IVF or somatic cell nuclear transfer (SCNT) techniques using donated gametes or cells, then such relationships would not exist. Thus, the basis for creation of research embryos for use in ES cell research is established. For embryos with such social relationships, their enhanced status cannot override the interests of parents who can claim full moral status. Yet the questions of how to show the proper respect to specific embryos should be addressed. If parents or donors take offense at such destruction based on the symbolic value of life, it would be morally objectionable to force such destruction. By observing the Transitivity of Respect principle in this manner we do not lose the opportunity for ES cell research. One reason is that since other embryos will be available for use in ES cell research, the potential benefits of ES cell therapies are not necessarily foregone. Therefore, ES cell research may continue even though the symbolic value of life in some embryos will be protected by allowing for the respectful disposal of such embryos. Thus, the Interspecific Principle may, but does not always, enhance the embryo’s moral status to a point where it is morally objectionable to destroy the embryo.
Within the Transitivity of Respect Principle, policy makers and philosophers alike should take into consideration the religious and traditionally held viewpoints of others towards these early embryos, but only where it is feasible or morally permissible to do so. In this case, I argue that it is morally impermissible to forgo the potential benefits to hundreds of millions of sentient, moral agents to whom we are obligated to seek the relief of pain and suffering. The relative costs and benefits of such decisions were briefly outlined above. However, one may ask, based on the Transitivity of Respect Principle, why it is not feasible to not take certain actions supporting ES cell research. I believe there are numerous valid responses.
First, we must recognizing that since ES cell research is not illegal in this country, it will continue in the private sector without significant legal or moral consequence. Thus, from a practical perspective, reaching common ground on embryonic moral status is a central component to answering the question of whether to allow federal funding for ES cell research. The lack of such federal funds will (1) slow research advances by keeping universities and key research teams out of the process, (2) eliminate government (NIH) oversight which would provide regulation and monitoring ensuring that embryos, donors, and patients are given the respect they deserve, and (3) will slow the development of many clinical applications since private companies will only pursue those activities or products which will quickly produce products and profits. If we were to either allow the private sector to conduct this research without the support of federal funding or to wait for the unlikely development of some other less objectionable means to cure such diseases such as Parkinson’s, diabetes, and Alzheimer’s, millions more people will experience much more death and suffering than if we were to allow federal funding. Thus, accepting the application of the other multi-criterial principles as articulated above, this faster road to cure is necessarily more ethical based on our ability (1) to alleviate the death and suffering of more persons and (2) to more adequately protect the interests of those with full moral status.
SOME LIKELY OBJECTIONS
Instrumental Use: Opponents of ES cell research (and particularly opponents of the creation of embryos for this research) who take a deontological position, will likely suggest that it is wrong to use embryos as a mere means to our ends rather than as ends in themselves. The argument claims that since in destroying the embryo we are using this “life” or this “human being” as a means towards some other’s end, then it is wrong to destroy the embryo. The response by advocates of ES cell research is that the embryo is not a sentient, rational, autonomous, or moral agent so it does not have full moral status, and, thus, cannot be considered as being “used.” In other words, it is impossible to “instrumentalize” (i.e., being inappropriately used as a means to another’s end) something which does not have full moral status. For example, using the multi-criterial approach, bricks may be used to build a house or a horse used to plow a field, but neither the bricks or the horse are instrumentalized. Likewise, using the full application of the multi-criterial principles, early embryos may be used to advance ES cell research, but the early embryos are not instrumentalized.
Potentiality: The Kantian objector, though, may seek some common ground and respond that it is the “potential” or “viability” of the embryo which must be respected. While I do not have sufficient space to address this concern completely, I will briefly mention a few responses. If we accept this potentiality distinction, we will have returned to the ill-fated debate of the evolving biological standards of potential which can be taken to extremes. For instance, is the oocyte a potential person warranting full moral status? If so, then we must do everything we can to ensure its fertilization, development, and birth. In fact, any missed opportunity to have sexual relations is a wrongful act since, in the eyes of the Kantian objector, we are not honoring our highest value of life. So at what point is a potential person established? Maintaining my earlier position, I suggest that this is a normative decision aided by science and such decision could be some point around 14 days from conception. More to the point, if the IVF embryo is a potential person, then it is morally impermissible to discard unwanted or unneeded IVF embryos. Enactment of such a requirement to bring to fruition all IVF embryos is not only impractical and implausible, but, I suspect, would not be supported by even the staunchest Kantian objectors.
Inherent disrespect to life / Slippery Slope: This objection is simply that once we start down the path of the creation of life only to destroy it for other’s purposes or benefits, then we will never be able to set an end to the dangers imposed on our “right to life.” It is suggested here that since the proponents of ES cell research justify early embryo destruction and disregard the embryo’s inherent moral status, the inevitable result will be diminished respect for persons generally. What follows, for this objector, is that such justification of early embryo destruction will result in a rationale which could justify harmful experiments on other human subjects. While some slippery slope arguments I suspect are valid due to the logical nature of the move from one situation to another, the current argument is clearly more psychological in nature. It is an argument essentially that in taking current actions our emotions and moral sensibilities will become desensitized to the wrongfulness of certain future and unforeseen actions which are clearly wrong. The practical answer to such psychological slippery slope arguments is cooperative deliberation geared towards establishing legislative boundaries against those future, feared actions. However, the most forceful response to the slippery slope objector is that no such justification for the harming or destroying of human subjects can occur within the application of the full compliment of the multi-criterial principles. The Agent’s Rights and Human Rights principles will protect the human subjects with which the objector is concerned. Such human subjects have full moral status which cannot be diminished. Therefore, any harm to a human subject which may be justified will require an entirely different rationale than was used for the destruction of the early embryo. Such justification will have to meet a much higher standard and does not follow logically or psychologically from the decision to conduct ES cell research. Thus, the slippery slope objector’s concern seems to be unwarranted in this instance. Nevertheless, the objector may still contend that I have not answered the question of specifically how to balance all of the interests and rights of those concerned. However, as I suggested above, no theory of moral status will give such answers outside of the context of the specific situation. The nature of the common ground I am seeking is one upon which we can collectively engage in such deliberations and the multi-criterial approach offers just such a ground. Thus, shortly I will offer some initial recommendations meant to be used as a start to our dialogue on how to balance interests and show respect.
Means Matter: While the common ground provided by a multi-criterial account of moral status may have helped us get to the point of gaining a reasonable consensus as to the use of some embryos in ES cell research, some objectors may still be uncomfortable with the creation of embryos either by IVF or somactic cell (SCNT) techniques. The objection is that the means of obtaining the embryos matters. Notwithstanding the fact that the promotion of creating embryos for research purposes (i.e., “therapeutic cloning”) is not a new idea nor has it even usually met with condemnation from review boards, the reasons for allowing such techniques should be articulated. One reason for allowing therapeutic human cloning is the issue of histocompatibility. The problem is that stem cells from donors may lack immunological compatibility with the recipients. Thus, a practical way around such difficulties is to clone the recipient’s own DNA, culture the resulting stem cells, and obtain completely compatible tissue for transplantation. Turning to therapeutic chimera cloning (see Appendix for definition), there is an underlying objection and intuitive objection to hybrid embryo creation based on the concern for mixing genes across species and the uncertainty of risks involved. One reason to allow such means as therapeutic chimera cloning is the reduction of potentially coercive forces on women to donate gametes. Since obtaining oocytes from women is a difficult and somewhat painful procedure, the availability of these gametes will relieve any potential feelings of pressure by women to donate their eggs. On a more practical note, Advanced Cell Technologies work has shown that the use of cow ova results in only a minimal and inconsequential DNA mixing. Using the nuclear DNA from a human and the mitochondrial DNA from the cow results in less than one millionth of the DNA of the resultant hybrid embryo being bovine. Such presence is of no consquence in the acquisition of the stem cells which will, in fact, have no bovine DNA. Furthermore, the use of animal proteins to create drugs such as insulin and the use of animal genes or cells to create transplantable organs or tissue (e.g., man in Albany, New York injected with fetal pig cells to repair spinal cord as reported in Associated Press on April 24, 2001) are widely accepted practices. It is hard to see a significant difference from these practices when compared to the creation of hybrid embryos for the derivation of human stem cells.
INDICATIONS OF COMMON GROUND
While there are those on the anti-abortion front who oppose any embryo destruction for any purposes, there are many other anti-abortion activists who hold that it is ethical to destroy the embryo or fetus under certain circumstances. Examples include when the life of the mother is at stake or the conception of the fetus is a result of rape or incest. Clearly, here, there are other ideals which are highly valued which trump the “right to life” of the fetus. In these examples, moral deliberations are over “rights to life” for mothers as well as the dignity and respect of women. Holding dear either of these values does not logically entail the diminishment of the embryo’s or fetus’ moral status, but it does reflect a willingness to balance whatever status it does have against other competing values. This would represent a recognition that the embryo’s “right to life”, if it exists, is not absolute. If the majority of those engaged in this moral deliberation can agree on this point, then the foundations of the common ground I am seeking have already been laid.
If we can agree that the embryo does not hold exactly the same moral status as an adult human, but that the embryo has some status and deserves respect, then the question is what actions and restrictions will most effectively demonstrate sufficient respect for human embryos. No ethical system will give us the answer to this question. The obligations of moral duty cannot pinpoint the specifics that are needed here nor can a strict utilitarian calculus do the work. The answers will only come from collaborative deliberation seeking to balance reasonable and supportable views. The reference points for these answers will be diverse and include personal preferences, religious perspectives, emotional paradigms (e.g., the level of passion one holds for the symbolic value of embryos), and medical beliefs (e.g., how beneficial and/or necessary this stem cell research will be). Some will want more respect for embryos, others will want less. Our goal is to find a common enough ground which the majority of us can accept.
HOW TO SHOW RESPECT
Place a limit on the time frame in which destruction of embryos for research purposes is allowed. I suggest 14 days after conception which is before the primitive streak begins developing and, thus, well before any possibility of sentience begins. This is also the point which is believed to be the last opportunity for twinning and, thus, before distinct individuation.
Place limits on the type of research allowed to include only such work that can show substantial benefit to the health of others and that can claim that human embryos are essential to the research.
Ensure informed consent for donors whether of gametes, frozen embryos, or fetal tissue. This regulation reflects the concern for individual autonomy and concern for the emotional well-being of those persons involved.
Ensure the decisions to abort fetuses or discard IVF embryos is separate and distinct from decision to donate to ES cell research. This policy reflects a shared goal to ensure that abortion or destruction will not be increased solely as a result of the opportunity to do some good with the donation of fetal tissue or IVF embryos. It aims at not legitimizing the acts solely through such subsequent actions. Any decision to abort a viable fetus should be neither induced or coerced by the possibility of benefit in donation.
Require the review by a national oversight body of research protocols whether the research is publicly or privately funded. This body should also be given the flexibility to adapt to future findings so as to avoid the bureaucratic delays that come in constantly refining legislation through the Congress.
Disallow the commercialization of spare IVF embryos, fetal tissue, or created embryos. This action will not only protect the status of our respect for life in general, but it will, importantly, guard against the exploitation of poor women who see donation of ova, embryos, or fetal tissue as a means to financial reward.
Prohibition of donation of fetal tissue to a specified recipient while allowing the donation of IVF embryos to a specified recipient. Such a measure further demonstrates the enhanced moral status of the developing fetus to that of the pre-14 day old embryo.
Clearly, both the Respect for Life and Transitivity of Respect Principles can further be heeded by assuring objectors that cloning of either human or hybrid embryos will not be used for “reproductive cloning” (bringing the embryo to personhood), but only for “therapeutic cloning.”
A clear and common understanding of the language we use and of our attributions of moral status will be of the highest importance to the success of our search for a common ground in this ES cell research debate. While I believe the moral imperative of compassion drives ES cell research, there are multiple values and goals which I recommend we appeal to in our deliberations. Mary Anne Warren’s multi-criterial approach enables us, through common-sense justifications, to embrace and honor these various and important values. If it is true that ES cell therapies have the potential to alleviate ill-health and to protect the lives of more than half of the world’s populationwhile not wrongfully impinging upon the interests or rights of others, then it is our duty to pursue this research in a vigorous, yet disciplined, manner. To unnecessarily prevent or delay such a valuable line of research is to act unethically.
As an example, note General Counsel to the NIH, Harriet Raab’s, decision to circumvent the current legislative ban on embryo research (See Timeline in Appendix II). Even the NBAC suggests that the derivation and use of embryonic stem cells are not “distinct ethical activities.”
Generally, these arguments attempt to establish the ethical permissibility of such measures based on the lack of complicity in the destruction of the fetus or embryo. See: Robertson, John, “Ethics and Policy in Embryonic Stem Cell Research”, Journal of the Kennedy Institute of Ethics, June, 1999, pg. 112-116. While John Robertson makes sound arguments for the weakness of this complicity in the destruction of embryos when using fetal tissue or spare IVF embryos, the fundamental question remains as to the moral status of the embryo.
I will not address in the issue of adult stem cells and cord blood stem cells as alternatives to ES cells. The reason is that these sources have not been shown to offer commensurate potentiality with ES cells. Nevertheless, there are still scientists working with adult stem cells who are reporting a greater ability for the cells to differentiate than was once thought possible. (See: Lewis, Ricki, “Human Mesenchymal Stem Cells Differentiate in the Lab”, The Scientist Vol. 13, No. 8, April 12, 1999.) Adult stem cells have demonstrated the ability to become several cell types. Though some scientists have predicted that “the need for fetal cells as a source of stem cells for medical research may soon be eclipsed by the more readily available and less controversial adult stem cells,” (See: Josephson, Deborah, “Adult Stem Cells may be Redefinable”, British Medical Journal 1999, 318:282) opponents of ES cell research cling to and overextend such claims by suggesting that there is no practical need to continue research with the ethically more questionable sources. Unfortunately, there is no scientific agreement on the potential of adult stem cells and most evidence suggests that diverse clinical applications using adult stem cells will not only take much longer to develop, but are also much less likely to ever occur at all. Even the NBAC, after extensive testimony from scientists, has concluded that adult stem cells represent an approach that will be “scientifically and technically limited, and in some cases, the anatomic source of the cells might preclude easy or safe access.” (See: NBAC, “Ethical Issues in Human Stem Cell Research”, May, 1999, Draft Report, Chapter 5, pg. 5.) The bottom line is that it is too early to make any definitive claims on this issue.
Here, I am leaving aside the argument from potential, i.e., that the embryo has the potential for preferences and interests and so should be considered to have them in fact. There is not sufficient room in this paper to fully address this objection, though I will return to it briefly near the conclusion.
Preference utilitarianism is a modification on classical utilitarianism which attempts to answer the objection that utilitarianism that attainment of pleasure and freedom from pain are the only things that people value. Preference utilitarians define utility as the satisfaction of individual preferences. Further, Singer claims that all valid moral claims can be derived from a single principle; the principle of equal consideration of comparable interests of all sentient beings. See Warren pg. 65
The US Ethics Advisory Board (1973), The British Human Fertilization Authority (1993), the Canadian Royal Commision on New Reproductive Technology (1993), the World Health Organization (1995), and the Austrailian Academy of Science (1997), the Clinton Administration (1998), and the British Parliament (2001) have all approved “therapeutic cloning” of embryos for research. (Some references from Erik Paren’s commisioned paper for the NBAC, “What has the President asked of the NBAC? On the Ethics and Politics of Embryonic Stem Cell Research.” 05/03/99, pg. 12)
These recommendations are the result of my reflections on recommendations made by various review boards and committees, including the NBAC, coupled with the multi-criterial account of the embryo’s moral status.
STEM CELL PRIMER
There are many types of stem cells and exponentially more uses. Essentially, stem cells are a unique and essential cell type found in the body. Generally, all have the ability to divide, renew, and commit to more specialized functions. Stem cells found in the early stages of embryonic development (up to the 8 cell stage) are considered “totipotent.” This means the cells have the ability to form all cells in the body and, in theory, to develop into a complete human being. Stem cells found at later stages of embryonic development are considered “pluripotent.” This means the cells are more “committed” or “differentiated” and can become any one of the 210 tissue types in the body, but cannot become a complete individual. These embryonic stem cells also have the ability to renew indefinitely and are considered by many “immortal.” Stem cells are also found in adults. These cells are highly differentiated, but maintain some ability to renew. Examples are stem cells which allow new skin growth and the renewal of blood cells.
Before discussing the specific types and sources of stem cells, I believe it is important to attempt to grasp the broad spectrum of implications which stem cell research can have in clinical applications. In general it is believed that potential applications for stem cells will include:
Better understanding of the human development process (embryology) and cellular decision making (genetic therapy) towards the treating and curing of both deadly diseases and developmental disabilities
Enhanced pharmaceutical development towards better testing of drugs for safety and efficacy
“Cell therapies”: Including the generation of both cells and tissue for transplantation into humans to repair or replace damaged or diseased cells or organs
Dr. Harold Varmus suggests that, “There is almost no area of medicine that might not be touched by this innovation.” In fact, he estimates than more than half the population of the world will benefit in a significant way from the future applications of this research. Below is just a partial listing of the conditions for which scientists believe there is evidence to suggest that therapeutic stem cell treatments will have a major impact:
-Cancer -AIDS-Parkinson’s-Alzheimer’s-Spinal Cord Injury-Stroke-Burns-Heart Disease-Arthritis-Down’s Syndrome-Sickle Cell-Diabetes-Huntington’s-Retinal Disease-Mental Retardation-Neurological Diseases like: Multiple Sclerosis
Human stem cells have several actual or potential sources:
Cord Blood – Stem cells are extracted from the blood that remains in the umbilical cord following birth.
Post-Natal Placentas – Stem cells are extracted from the placenta waste following birth
Cadaveric Fetal Tissue – Embryonic Germ (EG) Cells are derived from the human fetal tissue which remains after spontaneous or elective abortion. (Usually 6-16 weeks gestation.)
IVF Embryos – Embryonic Stem (ES) Cells are derived from the inner cell mass of the embryo at the blastocyst stage. Here the embryo is usually around 4- 7 days old and comprises between 16 and 140 cells. These are embryos which are created in the in vitro fertilization (IVF) process which are no longer needed by persons being treated for infertility. Generally, these “left-over” cells are either donated to other persons or discarded.
Research IVF Embryos – Here, embryos are created through IVF for the sole purpose of obtaining the ESCs for research. Gametes are donated from males and females with the understanding that the embryos will be used for research purposes solely.
Cloned Human Embryos – In this instance, somatic cell nuclear transfer (SCNT) is used to create an embryo for research purposes. Denucleated egg is fused with somatic cell (not egg or sperm – and ideally would come from proposed ESC recipient to avoid histocompatibility concerns) to produce embryo from which ESC’s are derived at blastocyst stage.
Cloned Chimera Embryos – SCNT is also used here, but the somatic cell of a human is introduced into an enucleated animal ovum (e.g. a cow) creating a hybrid embryo which takes on the human DNA.
Adult Cells – Stem cells are obtained from such areas as bone marrow, skin, blood, or even fat of live adult donors
Fetal Tissue and Embryo Research Funding / Ethics Timeline
DATEBODY / PERSONACTION1974U.S. Federal GovernmentBans the use of federal funds for human fetal research and seeks ethical review 1978National Commission for the Protection of Human Subjects – Dept. of Health, Education, and Welfare (HEW)Condones non-therapeutic research on cadaveric fetal tissue if less than 20 weeks old1979Ethics Advisory Board (EAB) – established by HEWIn reviewing embryo research it does not confer full moral status to embryo1981Indiana University ScientistsDerivation of mouse stem cells / Precursor to human stem cell research and application1984Warnock Committee – U.K.Establishes similar limited moral status for embryo as the EAB1985U.S. CongressBans federally funded fetal tissue research / Sets up Ethical Advisory Commission (EAC), however, no funds allocated so EAC never actualizes1988NIH – Advisory CommissionRecommends lifting the moratorium on fetal tissue from elective abortion1989Bush AdministrationAnnounces extension to the ban on federal financing of fetal tissue transplantation and research1994NIH – Human Embryo Research Panel (HERP)Recommends federal funding of stem cell research using left-over IVF embryos, Cadaveric fetal tissue, and the creation of IVF embryos solely for research1994Clinton AdministrationClinton bans the creation of IVF embryos for research1996U.S. CongressBroadens the current ban on federally funded embryo research via Dickey-Wicker Amendment to include any research which destroys or discards human embryos
(Note: No legislation prohibits privately funded stem cell research initiatives.)Nov. 1998Geron Corporation,
Menlo Park, CaliforniaOffers first reports of derived human pluripotent stem cells / Geron funded the University of Wisconsin and John Hopkins University studiesNov. 1998Advanced Cell Technology,
Worcester, MassachusettsReports creation of human pluripotent stem cells from human-cow chimera using somatic cell nuclear transferNov. 1998President Clinton Asks National Bioethics Advisory Commission (NBAC) to review stem cell research balancing medical and ethical considerationsDec. 1998Senate Appropriations Committee (SAC), Subcommittee on the Dept. of Labor, Health, and Human Services (LHHS)Begins hearings on Embryonic Stem Cell ResearchJan. 1999General Counsel to LHHS, Harriet RaabAnnounces decision to permit federal funding in human stem cell research so long as no federal funds pay for the derivation of the stem cells. Her ruling states that the statutory ban does not apply to stem cells since the cells are not themselves embryosJuly 1999President ClintonAnnounces support for soon to be released NBAC recommendations (Draft report submitted May, 1999)Sept. 1999NBACSubmits report and recommends federal funding for stem cell research using left over IVF embryos and cadaveric fetal tissue, but does not recommend creation of embryos for research either via IVF or cloning (Note: The NBAC does, however, suggest that a return to the consideration of the latter research is warranted as scientific advances progress.)Nov. 1999SACContinues hearingsDec. 1999NIHAnnounces preliminary guidelines for allowing stem cell research (Based on Raab decision)Feb. 2000Senators Arlen Specter and Tom HarkinSubmit S.2015: “Stem Cell Research Act 2000″ which allows both the derivation and use of stem cells. Additionally, the Act supports the “therapeutic cloning” of embryos for the purposes of research (In line with HERP’s 1994 recommendations)Aug. 2000NIHAnnounces final guidelines for federal funding to support stem cell research so long as no federal monies are spent in the derivation of stem cells and the stem cells only come from left over IVF embryos or cadaveric fetal tissue
By Edward S. Harris,†Chowan College
For years our understanding of suicide has been commonly defined, as simply, “the taking of ones own life.” Furthermore the word “suicide” in the western tradition has held a negative connotation; most believe that the use of suicide as a solution to a problem is a cowardly act or the action of someone who is not mentally stable. However, over the last century with the groundbreaking research of Emile Durkeim the definition of suicide has proven insufficient. Tom L. Beauchamp has suggested that in order to fully understand suicide properly, we require a morally neutral definition since many different types of action must be noted as suicide and not all actions in which one takes his/her life are morally reprehensible. Along these lines, I propose that we speak of three kinds of “self-killing”: self-sacrifice, accidental self-destruction, and suicide. Each form of self-killing has different implications for ethics. This will assist us in recognizing what situations amount to suicide and assessing their moral implications.
There are a variety of reasons as to why people part in the behavior of suicide. Some people kill themselves in desperation or in a state of depravity while others end up taking their lives in an act of self-sacrifice. Nonetheless, there is much to be learned when provoking consideration of the question of what exactly is meant by and constitutes as suicide. If you were to ask the average Joe on the streets to define suicide for you, he would probably say, “suicide is when a person takes their own life.” Little do they know, just how inclusive such a definition of suicide really is or the historical developments prescribed within the word. What’s more, the word contains within society certain feelings or connotations that strictly inhibit how we are able to perceive suicide. For example, when looking at the end of the movie Armageddon a question arises, do we really want to associate the act of suicide with the act of self-sacrifice. Bruce Willis’s Character at the end of the movie choose to take his life in an explosion on a meteorite in order to knock the meteor off its earth bound path in order to preserve life on earth. The majority of people do not consider such an act suicide and thus show that even though they may see what Bruce Willis character did as self-killing they are hesitant to label it as “suicide.”
A Historical Analysis
Suicide has always been a term that has caused problems in moral understanding. The moral implications and confounded justice of the act has left language frustrated in expression. In the English language, the word “suicide” was developed somewhere around the time of 1651. English society itself has perceived suicide as a wrong against society and oneself. This is reflected in two distinct ways. First, the word suicide itself is a negatively set term. All the prior English terms up to that point also viewed suicide negatively. “Prior to the seventeenth century the English terms for suicide included self-homicide, self-destruction, and self-murder” (Velasquez 1987). In the articulation of the word suicide one can see the continued development of this view. The English word Suicide is derived from the Latin term suicidium, which simply means self-killing. When the term is broken down into its roots Sui- which means self, and -Cide which means to kill, one finds the basic structure. In carefully emphasizing the root -cide in suicidium English culture has taken a relatively neutral word with negative overtones and turned it into an act injustice. We commonly associate the word suicide with similar word constructs such as: homicide, fratricide, and genocide which all have negative definitions. Thus, Indo-European culture describes suicide as a mode of killing rather than a mode of dying which was how it was perceived in Roman culture.
Roman Culture perceived suicide with more of a grayness. Suicide to Romans had both heroic and immoral associations. Suicide was a means of avoiding disgrace for Romans. It was greater to embrace death than to surrender or be punished. This conception of suicide is not a purely Roman Idea; rather, it is a direct result of their embracing of Greek Culture. The ancient Greeks perceived suicide in terms such as: “to grasp death,” “to die voluntarily,” and “To die by one’s own hand.” (Velasquez, 1987) Such phases show a lack of moral consequence to the modern dilemma of understanding suicide. It is much easier to define and holds little or no need for ethical understanding. Suicide was perceived as a positive mode of dying because it spared its participants of disgrace, and in some cases was associated with acts of courage and bravery. Yet, like the modern explanation the Greek understanding still struggles in that the language used to glorify suicide does not address in detail all the many moral questions that the issue of suicide presents. Though, it is a reflection of ancient Greek culture, do we want such thoughts being pervasive in today’s society?
In full light of the opposite perceptions of suicide found in the modern definition and the ancient Greek, one must ask two questions. First, when and where in history did suicide change its meaning? The change in meaning and feeling toward suicide can be associated with the birth of Christianity. The Indo-European understanding of selfkilling stems directly from the development of Judeo-Christian Ethic and its sweeping influence on both culture and the language. No one truly knows exactly where the idea that suicide is an unforgivable sin originated but St. Augustine is considered the most prominent and influential opponent of suicide from the early Church. Later during medieval times so strong was the opposition towards suicide that proper Christian burial was denied to those who committed suicide (Kennedy 1987). Thus, the Judeo-Christian Ethic is responsible for traditional definition reflects this view applying a negativity to the action.
Secondly, If suicide has been viewed as both moral and immoral then whose understanding is right for something cannot be both moral and immoral at the same time. It just such a question that forces modern scholars to sit down and very closely evaluate the term and seek a concise and decisive understanding for the term suicide in order that moral standing can be easily distinguished.
Understanding the Definition and the Possibilities constructs for Suicide
How do we know what acts are to qualify as suicide? As indicated above social attitudes are commonly reflected in a culture’s conception of the term. Such attitudes also seem to be reflected in just how clearly the word is defined. In cultures where suicide has approval there is a strong understanding of suicide. In Japanese culture, for example, there are basically two types of suicide: honorable and dishonorable suicide. Honorable suicide is a means of protecting the reputation of one’s family after a member has been found guilty a of dishonorable deed such as embezzlement or flunking out of college, or to save the nation as in the case of the kamikaze pilots in World War II. Dishonorable suicide is when one takes his or her life for personal reasons in order to escape some turmoil. This is thought of as a cowardly way out of life and a coward can only bring dishonor to his family. Thus, the definition of suicide in Japanese culture is positive and for the most part concisely defined.
In American culture on the other hand suicide typically defined as a person taking his or her own life. Americans consider suicide as a negative action and take it very seriously to the point of making such acts against the law. Americans attitudes towards suicide take on paternalistic philosophy in seeking to prevent suicide. The philosophy assumes that people, who are found in contemplation of or in the act of attempting suicide are in need of help or not in their right mind. It is thus the responsibility of every person to intercede and stop them from committing the act because it is believed that more often than not individuals who attempt such an action are not taking their own wishes into true consideration. Rather, they are trying to relieve themselves of a problem that can be fixed, only at the present they cannot conceive an end to their problem. As a result they need help to survive the trauma. This view is further supported in the fact that fewer than five percent of persons in the US who attempt suicide actually kill themselves within five years of their original attempt, and only about ten percent of those who attempt suicide ever take their lives (Beauchamp, & Veatch, 1996). Therefore in America there is a very negative association attached to suicide as well as, a very broad black and white understanding of suicide.
Putting the Japanese and American views in perspective, a definition of suicide can either be broad or narrow in arrangement. Both types of definitions have good and bad qualities. A broad definition acts as a sponge in that it meets minimal requirements for understanding ambiguously what constitutes as suicide and shows no bias to any cases. As a result, such definitions are all encompassing in nature and easy to understand. For example, if one defined suicide as, “the act of killing oneself,” then as you can see the definition is very easy to understand and observe. On the other hand, such definition is not broken down in a way to examine the uniqueness of certain aspects of the situation or to differentiate between variables such as accidental death and purposive death. Lastly, vague definitions do not help us understand the situation that is being presented before us. It only devolves into the realm of general knowledge (Velasquez 1987).
A narrow definition allows for a stricter interpretation of a term and forces people to closely examine situations which involve the term. Though, on the onset a narrow definition seem more confusing and complex in nature. However, narrow accomplishes much more than a broad definition by focusing directly in on the many variables offered and making stricter criterion for our individual understanding. Whereas, a broad definition, due to its all out exclusiveness can never be focused. For example, when we look at the American culture we have a broad scope of what it means to be an American. On the other hand within America itself we have many sub-cultures such as the Northern, New England, Southern, Southwestern, Californian, Mid-western, Alaskan, and Western cultures that make up as a whole the American culture but if they are not examined independently to meet several restrictions that reflect that group we will never truly understand American culture. Narrow definitions are thus needed to break down and understand concisely what a term needs to reflect. An example of a narrow definition of suicide would be,
“the purposeful act of seeking death and acting upon that purpose provided that such a death is brought about by one’s own act, that those acts are carried out as premeditated, the motives are selfish in nature, an external object is used, and death is actually brought about” (This definition stated above is not meant be actually used but rather is a half truth used to view what a narrow definition looks like).
As can be seen, such a definition is severely limiting in nature and designed to focus in on and clearly give structure to the language. The problem with narrow definitions is that, in being decisive, they leave a void for understanding other types of situations that may be close to the matter but not applicable; thereby, forcing us to create new terms for comprehensive understanding. Both types of definitions, broad and narrow are needed for full understanding and categorization. A broad definition will encompass a larger set of terms and cases, and a narrow definition will help discriminate between conditions such as reason, behavior and situations to give a stronger definition.
The Defining of Suicide in Philosophical Debate.
The traditional or legal definition of suicide was first given serious clarity by Emile Durkeim. Durkeim defines suicide as. “a death resulting directly or indirectly from a positive or negative act of the victim himself, which he knows will produce that result” (Durkheim, 1966). Though this definition is good in many matters; however, there are distinct problems and issues that are not addressed suicide. Paul Beauchamp addresses some of these issues. First, Beauchamp notes that if a person is coerced into taking his life it should not be considered as suicide. If a person is handed a cyanide pill and told that they have a choice to either kill yourself or we will kill your family then it should not be considered suicide if the individual takes the pill. The reason is that person is not an autonomous individual in that case (Beauchamp 1996). The pressure being applied to that individual has limited their ability to choose and only brought the possibility of person self-killing into existence as a result of an external pressure from some other source (furthermore, he is partaking in a selfless act of sacrifice for the sake of his families lives). It is not the will of the individual to with the pill to die; rather, he or she is being coerced to end his or her existence. In another instance a man is blindfolded and taken to the dock where cement shoes are placed on his feet and his hands are tied behind his back. The individual is then told to jump. If he jumps, is he committing suicide, or is he just facing the reality of his situation in that he is going to die in the next couple of minutes anyway? So then, why not jump? In jumping, the person is not committing suicide since his captors will kill him anyway. Rather, the coercion of his situation has him marked as dead and thus murdered. He is not at any point able to escape his execution and might as well be in control of his end than be pushed. His death is immanent and thus, nonautonomous.
Another problem Beauchamp addresses, is when death results from a condition, such as disease. The best example of this is in cases where a person refuses treatment for disease. The individual did not arrange the disease as a means of death but uses it to aide in death, should then the individual’s action be considered suicide? If a person refuses treatment for a curable disease with the intent of bring about death and thus does die, then his or her death may be labeled as suicide. On the contrary, if an individual has been diagnosed with a terminal decease and rather than lengthening his or her life through medicine, seeks to live qualitatively for the remainder of that life then, such action cannot be considered suicide (Beauchamp, 1996). Furthermore, if someone who is diagnosed with a terminal disease recognizes a lack of quality in life due to the disease and seeks to die at home rather than with pipes and hoses in their mouth and thus refuses treatment then refusal of treatment cannot be contended as suicide. Refusal of treatment because of a lack of cure in pursuit of quality or peace is not suicide but rather a way of leaving respectably and allowing a conscious and honorable way in which to saying goodbye.
Another point made against Durkeim’s definition is that of Germain Grisez and Joseph Boyle Jr. They suggest that when a person is in a non-rational state and death is brought about then it should not be considered suicide. This question however does not really disagree with Durkeim. It is fully compatible with all the measures of reasonability within Durkeim’s solution. However, a case can be made to this point that no one is really rational if they attempt or succeed at suicide. The only rationality that should be excluded from suicide are cases were mental inhibitions or lack of knowledge result in the death of one. Such as in cases where a toddler’s ball rolls out into the middle of the road and the toddler chases it and is hit by an oncoming car. The toddler’s intent was first only to get the ball but the child due to lack of knowledge did kill him or herself. Children though are not really autonomous beings in many cases, and due to lack of cognitive or special development can comprehend nor intentionally commit suicide. In another case if a person who is suffering from a mental illness such as schizophrenia commits suicide because they the voices in their head told them to, then such an act of death cannot be considered suicide. The mentally ill individual who took his or her life was not in a rational state of mind when said action took place. Rather, they were merely responding to internal stimuli that was beyond their control. The underlying cause in both cases is, “the idea that self-destructive acts should be counted as suicide only if they are morally blameworthy and since the acts of a non-rational person are not morally blameworthy they should not be counted as suicide” (Velasquez, 1987).
One last critique of Durkeim’s definition of suicide deals with the question of whether acts of self-sacrifice should be considered as suicide. If a person dies during an altruistic act, is it really suicide? For example, if a soldier is out in the middle of a battle and a grenade drops in his vicinity, and he jumps on the grenade to save the lives of his compatriots, is he committing suicide? NO. The main reason being, is that he did not throw the grenade himself. Rather, it was an outside force with the purpose of inflicting death that is responsible. The soldier merely saw the greater good that would be achieved if he or she altruistically gave up his or her life for the preservation of others. The rationale was virtuous and should not be grouped together with acts where death was brought about as a result of selfishness. In looking at another case where an underground spy during World War II has been captured by the Nazi’s and to prevent himself from giving out vital information during torture he takes a cyanide pill and kills himself. This individual’s action differs from suicide in that he has made a self-sacrifice but death has been brought about by his own measures. Again the answer is no for he is only a victim of his plight and knows that his death will prevent the capture of others and forward the cause. Therefore, he died because of his cause and not because of himself. Even though he knowingly ended his own life purposely and consciously he is only killing himself in a rational manner that is perceived as a betterment of good..
A New Definition of Suicide.
Beauchamp’s definition of suicide is one of the first corrective attempts to formulate a more narrow and solid definition of suicide. Beauchamp states that,
“an act or omission is a suicide if a person intentionally brings about his or her own death, unless the death (a) is coerced or (b) is caused by conditions that are not specifically arranged by the agent for the purpose of bringing about death” (Beauchamp, 1996).
There are several advantages to Beauchamp’s definition. First, the definition is consistent with a long legal tradition of determining when persons are or are not suicides by reference to the definition. Secondly the definition does not prejudge the morality of suicide; rather, the definition is morally neutral Finally, the definition takes into account our reluctance to categorize certain forms of coercion and treatment refusal as suicide.
All of these points are positive except for the idea of suicide being a morally neutral word in modern societies. I do not know of any tombstones where a person died as a result of an act of altruism as saying that here lies _____ ______ who died as a result of suicide. No. Usually such tombstones honor the individual with a word of self-sacrifice other such epitaphs. Most people would reject heroic acts as suicide, for suicide is considered to be an act of internal despair. Suicide is a negative word, and because of its negative orientation it cannot be viewed in a neutral or positive light. Therefore, the socially accepted orientation of the word should be incorporated into our definition of suicide. It is the everyday understanding of suicide that makes it definable.
Velasquez, on the other hand, agrees with Beauchamp on defending suicide as needing to be conceived as a morally neutral term. Velasquez surmises that being by points out several features that are common to all the objections against Durkeim’s definition. Each objection refer to a type of self-killing that is morally blameworthy. Velasquez identifies three reasons why one should not assume that suicide is by definition immoral. First of all, such a definition would preclude discussion of the question whether suicide is ever morally permissible, when in fact; discussion on moral permissibility will always exist. Even if you classify suicide as having negative moral value, it can still invoke discussion as to the ethics of the situation or to the actions themselves. For example, stealing is considered a morally negative word but we can still consider the possibility that stealing may be justified in certain situations. For example, a man who is hungry and has no money or way of getting money may not be blamed for stealing. Similar situations can be said to exist with respect to suicide. One can argue that certain acts of self-destruction are clearly acts of suicide, yet it can also be argued that they are not morally blameworthy (Such as in altruistic and irrational cases). In refutation, altruism and irrational cases are not suicide at all and are not conceived as suicide; rather, are intrinsically different cases all of their own that require their own definition. Cases of altruism, and irrationalism should be excluded from the category suicide because of the kind of agency or mental state that each case involves. In each type of case the agency and mental state are most always different. Altruistic cases differ totally from suicide cases in motivation, and intention. The only commonality between the two is that self-death occurs. Take the case of the person who killed himself to save his family compared to a case where a person has just been dumped by his girlfriend and can’t stand the pain any longer so he ends his life by shooting himself in the head. The motivation of the man dying in self-sacrifice is his love for his family. On the other hand, the motivation of the individual who lost his girlfriend is the not being able to deal with the pain of rejection, betrayal, and the depravity of life without her. One is motivated by love; the other is motivated by selfishness. As far as intentions are concerned, the man saving his family does not want to die but is willing to do so for the safety of his family. While in the case of the man who lost his girlfriend, he intends to die in order to alleviate the pain inside of him.
A New Understanding
First of all, to fully understand the issues that have been presented above there must be an all encompassing and inclusive word besides suicide that can accommodate the variety of different acts associated with the term suicide. One such term, Selfkilling, fits both in language and in context. It is a term that is practically self-explanatory in nature, vague in descriptions, and yet strong enough in language for evaluation. Selfkilling can be defined as: A death resulting directly or indirectly from a positive or negative act of the victim him or herself, which will produce that result (Derivation of Durkeim’s definition of suicide). This definition makes selfkilling a morally neutral word that is all-inclusive of any type of death, which is brought about by ones own self. It is morally neutral in that it leaves the question of morality and perception up to much more narrow definitions of which divide and separate the different types of selfkilling into positive, neutral, and negative. Positive selfkilling is called self-sacrifice, neutral selfkilling can be called self-irrationicide, and negative selfkilling can be called suicide.
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Self- Sacrifice Self-Irrationicide Suicide
In defining these three terms there are three different elements of understanding that must be incorporated into the definition in order to segment and differentiate the definitions and stay in step with the traditional legal definition of the term. First of all, there is the element of motivation. What has or is motivating an individual to commit an act of selfkilling? The logic or situations that have lead to the point of participating in selfkilling. The second element is intention. What are the intentions of the individual who is willing to partake in selfkilling? Persons who intend to commit an act of selfkilling have both a motive and intent behind their action or in other words a cause and reason for their course of action. The final element is that of causation or the effect of the motive and intent, which in all cases of selfkilling is death. These set of element, thus; align themselves with the theory of cause and effect which states: For every positive, neutral, or negative action (Motivation) there is (Intention) a positive equal or negative reaction (Causation).
The act of an individual that brings about the individual’s own death due to compassionate and/or belief orientated motivation, which is the result of either extrinsic or intrinsic circumstances.
To save someone’s life at the cost of one own
To die in order to protect the lives of others
To go into a situation that will knowingly cause ones death in order to stand up for what one believes (Kamikaze Pilots of WWII good example).
The act of an individual that brings about the individual’s own death due to inexperience, ignorance, or lack of cognitive understanding of a situation, which is the result of extrinsic circumstances.
A infant who hit by an oncoming car while chasing a ball
To get alcohol poisoning (smoking and chance of cancer)
To die not realize how fast one was going while coming off an ramp and smashing into a stoplight
The act of an individual that brings about the individual’s own death due to selfish motivations, which are a result of intrinsic circumstances.
Depravity of life
Temporary Extreme Mental and Emotional Dissonance
Extreme Persistent Physical Pain (usually as a result of terminal illness)
End of life Depression.
Beauchamp, Tom L. “The Problem of Defining Suicide” Ethical Issues in Death and Dying. Prentice Hall Inc. Upper Saddler River, New Jersey. 1996, Pg. 113-118
Beauchamp, Tom L. & Veatch, Robert M. “Suicide” Ethical Issues in Death and Dying. Prentice Hall Inc. Upper Saddler River, New Jersey. 1996, Pg. 101- 105
Durkhiem, Emile. Suicide: A Study in Sociology. Translation: John A Spaulding and George Simpson. New York: Free Press 1966
Kennedy, Thomas .D. “Suicide and the Silence of Scripture” Christianity Today. March 20, 1987
Velasquez, Manuel, “Defining Suicide.” Issues of Law and Medicine 3. 1987. Pg. 48-49