Chapter 12 :   Genetics, Intervention, Control, and Research

Section 4. Readings

Ronald Munson and Lawrence Davis: Germ-Lime Therapy and the MEDICAL IMPERATIVE

There exists the imperative to promote health and so there is an obligation to pursue such therapy.

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Robert Wachbroit: DISOWNING KNOWLEDGE: Issue in Genetic Testing

Against Paternalism:

Do Physicians have a duty or a right to inform people of the test results?

Do people have a responsibility to learn of their condition?

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PITFALLS of GENETIC TESTING by Ruth Hubbard and R. C. Lewontin New England Journal of Medicine Vol. 334, no.18 (1996) pp 1192-1194

Test for conditions: treatable, non treatable, unpreventable

summary by Claudia Williams SCC 2007

This article Hubbard and Lewontin break down why genetic testing has little if no "practical value and can cause unnecessary harm." They talk about how many doctors use genes to explain why certain things like diseases and mutations happen. They say that some doctors think that testing people for "bad genes" will help determine why they have certain conditions. "DNA tests cannot usually help clinicians or benefit patients –and not only because the techniques are still inadequate, but also because biologic phenomena results from multiple and complex interactions." They believe that although someone may have a bad gene which can cause things like cancer, it does not necessarily mean that they will have cancer. By testing the genes it doesn’t take into count the other factors that may be there, thus causing false thoughts among the person tested. "Physicians need to recognize the limitations of the new information and the commercial pressures behind the speed with which preliminary scientific data are being turned into tests." Hubbard and Lewontin believe that doctors should not be so quick to endorse the production and use of early testing kits that individuals can perform on their own.

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Genetic Dilemmas and the Child's Right to an Open Future  by Dena S. Davis in Hastings Center Report, Volume 27, 7-15, 1997

Must counselors assist couple to have a defective child?

Summary: Nicole Brodsky, SCCC, 2007

Davis portrays the concept of autonomy and the perspective of genetic counselors, sympathizing with the difficulty they face in terms of making decisions to benefit a child, his or her parents, and the general well-being of the family. She refers other counselors' poor decisions as the unjustifiable denial of a child's "open future." She beings by acknowledging a genetic counselor's immediate and everlasting respect for a care recipient's autonomy, contesting that it resides greater with respect to genetic control than it does in almost any other area of medicine. With that in mind, Davis continues to define the majority of counseling dilemmas in two categories: the refusal of the ill to share test results and information with siblings and family members, and the declination of a family member to participate in testing protocols necessary to help another member "discover his or her genetic status" (Munson 329). The latter portion of Davis' entry incorporates the discussion of children's rights in four-fold. First, rights that children and adults have in common; second, those possessed only by children; third, those rights exercised only by adults and finally, "rights-in-trust," "rights which are to be 'saved for the child until he is an adult'" (Munson 331). Davis voices that children's rights should be heard and respected.

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 Can Having Children Be Immoral?   by Laura M. Purdy Publication Information: 1995 Used by permission of the author

1. there exists a duty to provide all children with a normal opportunity for a good life.

2. we don't harm possible children by not letting them exist

3. the duty to provide for (1) takes precedence over parent's right to reproduce

Therefore, use prenatal screening and abortion or do not conceive

Summary by Jason Chirichigno, SCCC 2005

For the author, there is a fundamental question to reproduction, "Is it morally permissible for me to have children?" (p. 611). Purdy quickly delves into many of the social factors that can and should arouse people to ask this question. Those living in a society torn by war, a society in fear of war, poverty, lack of social support and resources, are all legitimate reasons that Purdy claims for someone to question the feasibility of reproducing. However, Purdy feels that genetic factors can and should also play a role in a couple's decision to have children. With this in mind, Purdy quickly touches on the abortion issue and its interconnectedness, coming to the conclusion that, "conception can sometimes be morally wrong on grounds of genetic information, although the judgment will not apply to those who accept the moral legitimacy of abortion and are willing to employ prenatal screening and selective abortion" (p. 611) Purdy also suggests a legitimate right not to believe in abortion, however, she cautions those at risk of degenerative genetic diseases (ie Huntington's Disease) (HD) to avoid becoming pregnant if they are not willing to have an abortion. Purdy then moves on to citing the example of HD as a genetic disorder that can easily be avoided being passed on through simple screening of the parents or prenatal screening of the child followed by elective abortion if the child tests positive.

Purdy begins this section with a complete clinical description of HD, including its late age of onset, motor and psychological degenerative symptoms. Purdy has a problem reconciling some people's views that they should be allowed to reproduce regardless of any inherent risk. With Huntington's Disease those affected stand a 50% chance of passing on the CAG repeat disorder to their offspring. Purdy points out that genetic counselors consider a 10% chance of passing along a genetic disorder to be high, while 50% is astronomical. The crux of Purdy's argument revolves around the following sentiment, "It is one thing to risk one's own welfare, but quite another to do, so far as others and without their consent" (p. 613). In order to fully understand why reproducing in such a situation is morally wrong, Purdy wants us to look at the position of the "potential" child, then at that of the "potential" parent.

Purdy cites three theories to support her claim that it is irresponsible for a parent affected with HD to become pregnant without the option of abortion if the child tests positive: 1) We have a duty to provide a child with a good life. 2) No harm comes from preventing a "possible" child from existing. 3) The parents reproductive rights do not take precedence over the child's normal opportunity for a good life. (p. 616). For Purdy, the concept is very simple. If you are affected with Huntington's your child has a 50% chance of acquiring the disorder. If you do not believe in abortion then it is morally irresponsible to attempt to become pregnant as you have a very high risk of passing the disorder to the child. If you believe in abortion you can attempt pregnancy and then have prenatal screening. If the child is positive for HD you have an abortion and if negative, you can have your child. For Purdy this cannot change, "until we can be assured that HD does not prevent people from living a minimally satisfying life, individuals at risk for the disease have a moral duty to try not to bring affected babies into this world" (p.616).

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 Implications of Prenatal Diagnosis for the Human Right to Life  by Leon Kass

Printed in: Ethical Issues in Human Genetics: Genetic Counseling and the Use of Genetic Knowledge, edited by Bruce Hilton, Daniel Callahan, Maureen Harris, Peter Condliffe, & Burton Berkeley (NewYork: Plenum, 1973), pp. 186-199.      Reprinted in: Munson, Ronald. Intervention and Reflection: Basic Issues in Medical Ethics. 6th Edition. Wadsworth-Thomas Learning, CA. pp. 617-624

What criteria for abortion?

What is "unfit" to live?

Summary by   Stephen S. Tiffany (2002) Suffolk County Community College

Leon Kass is concerned with the idea that abortion of genetically defective fetuses, specifically as a result of those abnormalities, might create a society in which the genetically abnormal are accorded fewer rights than their genetically normal counterparts precisely because there would eventually be so. He states, "all human beings possess equally and independent of merit certain fundamental rights, one among which is, of course, the right to life." (Text. p. 617) That fundamental human rights belong equally to all is the strongest moral belief of the last two or more centuries … since the time of the revolutions that toppled the absolute monarchs and brought law and rule into the realm of the people. Kass considers several thoughts and arrives at the statement: "One might even wonder whether the development of amniocentesis and prenatal diagnosis may represent a backlash against these same humanitarian and egalitarian tendencies [removal of stigma and disgrace previously attached to victims of congenital illness] in the practice of medicine, which, … has itself contributed to the increasing incidence of genetic disease, and … genetic abortion." (Text. pp. 617-618)

To further his arguments, Kass distinguishes between "What decision and why?" and "Who decides and why?" He claims that the first question is the moral one and that it "does not disappear simply because the decision is left in the hands of each pregnant woman." (Text. p. 618) He believes that the moral health of the community will be adversely affected by the increasing number of genetic abortions that are performed and by the uniformity that this will engender. Further, Kass explains, that without the present technology and the availability of genetic counseling, there would be no abortions for purely genetic reasons; thus, society must accept responsibility for these abortions because it has worked to make these things readily available to all individuals.

Kass continues with the disclaimer that he cannot know what he would do, personally, if faced with the knowledge that he and his wife were expecting a genetically imperfect child, and he empathizes with those individuals who opt for abortion in these circumstances. His major objection with personal responses in favor of genetic abortion is grounded in the idea that "in seeking for reasons to justify this practice, [he] can find none that are in themselves fully satisfactory and none that do not simultaneously justify the killing of ‘defective’ infants, children, and adults." (Text. p. 618)

In considering the issue: Genetic Abortion and the Living Defective, Kass posits the idea that the few genetically defective fetuses who escape abortion will become people who are viewed as "unfit to be alive." (Text. p. 618) Society will treat these people as less-than-equal and will come to resent the additional burden that they pose. Parents of these children may treat them differently, less well than others, because genetically imperfect children will no longer merit first-class consideration. In support of his position, Kass refers to the Maryland parents who refused corrective surgery for a Down’s Syndrome child … surgery that would have been routine were that child "normal." He suggests that we are already risk justice no longer being blind when applied to genetically defective human beings.

Further, if the majority of genetically defective fetuses are aborted, the few who escape this fate may be resentful of the life they are forced to live. This can only be true of those whose genetic defects do not affect their mental capacities, but it may supply the fuel for a great many more "wrongful life" suits brought against parents and medical professionals. The costs of these actions may become a tremendous burden on society. If amniocentesis becomes routine, and if it follows that genetic abortion becomes the norm, then the problems of the few who escape will multiply precisely because they will be so few.

It is important, also, to consider how we will view and act toward those "abnormals," some of whom will always exist, if we try to weed out most of them in utero. Will we continue to protect those among us who need our protection or, will we react with a lack of humanity, reminiscent of the treatment of Blacks in times of slavery, Native Americans while our country was being settled, and Jews in Nazi Germany?

Kass goes beyond abortion for genetics alone when he discusses: Genetic and Other Defectives. He asks, "For in the case of what other diseases does preventive medicine consist in the elimination of the patient-at-risk?" He points out that the language we use creates a feeling that the person or fetus is the disease rather than has a disease. In this way, Kass suggests, we convince ourselves that we must eliminate defective persons or fetuses, not simply diseases. It is not difficult to imagine that we will take the short step from the elimination of the genetically defective to that of the elimination of those fetuses whose genetic make-up predicts a less-than-desirable personality for her/his society. This is already in practice in some places where welfare mothers are "encouraged" to accept sterilization as a condition for receiving their monthly stipends. Kass asks: "Those who are concerned about abortion fear that the permissible time of eliminating the unwanted will be moved forward along the time continuum, against newborns, infants and children. Similarly, … we should be concerned lest the attack on gross genetic inequality in fetuses be advanced along the continuum of quality and into the later stages of life…. What price the perfect baby?" (Text. p. 620)

In the next section of his article, Kass discusses: Standards for Justifying Genetic Abortion. The first argument in favor has to do with the welfare of society and its limited resources. This is frequently reduced to actual cost, a questionable approach to the value of any individual human life. Kass summarizes this argument with a quote from Andy Capp to his wife: "Sweetheart, name me one person who wants t’stop livin’ on account of the cost." (Text. p. 621) In addition, how do we quantifier the possible costs of social conflict that may result from the refusal of some to abort genetically defective fetuses even in face of the demands of society to do so? Will the needs for perfect children change the ethics that govern our medical professions? If so, will society lose something precious … something that we need to guard jealously and retain?

It is possible that the individual who raises the child with genetic defects becomes immeasurably more compassionate and wealthier emotionally as the result of being intimately involved with this person. How do we quantify this in terms of dollars? According to Kass, "The standard of potential social worthiness is little better in deciding about abortion in particular cases than is the standard of economic cost." (Text. p. 621)

Finally, Kass discusses the concept of "societal good," and its different meanings for different individuals in different circumstances. When we speak of society are we referring to our families, our limited, personal scope, or all of human kind? Is it possible to be certain about what is best, genetically, for the continuation of the species? Overall, trying to determine the usefulness of genetic abortion for societal good is a Herculean and next-to-impossible task.

The second argument in favor of genetic abortion turns on the welfare of the parents and the family. This is more appealing to most of us than the argument based on the good of society as a whole. One can argue, however, that the care of a less-than-perfect child might, in the end, provide more good than harm for the family. Though this is uncertain, it certainly suggests that there are many ambiguities in deciding to abort in order to preserve the health of the existing children. The elasticity of these decisions seems to create a shaky basis, at best, for genetic abortion. There are, throughout our society, parents who wish to give birth to genetically defective children. If these parents do not want to have "normal" children, the converse argument will encourage them to abort any fetus that does not have a genetic defect.

The third alternative argument for abortion of genetically defective fetuses is the concept of "nature as a standard." In the nature of things, there is no real reason to guarantee the survival of the least fit among us as they will not add anything to the species. This seems to indicate that abortion of genetically defective fetuses is in the best interests of Homo sapiens and provides an objective standard; one that will not change and shift with the times and public policy. It is also the principle on which most physicians and genetic counselors base their consultations with expectant parents. The problem with the natural standard occurs when the lines are blurred and when the cases are not severe enough to be distinctly absolute. How do we determine what is truly human in terms of life and what constitutes non-human? Though this may be possible for some of the most severe retardations, who has this right when it comes to physical imperfections such as blindness? Kass believes, "the natural standard … may be the most dangerous one in that it leads most directly to the idea that there are second-class human beings and sub-human human beings." (Text. p. 623)

It is important to remember that nature is ambiguous and that the natural standard is the one that has been used to justify discrimination and prejudice in many circumstances, more than the few referred to above. All animals, including people, are alike in two aspects: self-preservation and the capacity to feel pleasure and suffer pain. In this, Kass claims, the fetus … defective or not … is equal to all other animals. "But for this reason, this understanding of nature does not provide and may even deny what it is we are seeking, namely a justification for genetic abortion, adequate unto itself, which does not simultaneously justify infanticide, homicide and enslavement of the genetically abnormal. (Text. p. 623)

In passing, Kass speaks of nature as sacrosanct … as created by a Creator. He reminds us that he has not considered the religious standard. He chooses to leave this standard "to those who are able to speak of it in better faith." (Text. p. 623)

Kass concludes with a statement about his frustration with trying to determine and develop a moral justification for genetic abortion. He wonders if, perhaps, the pragmatists are right and if he should allow himself to be convinced that genetic abortion is a pragmatic rather than ethical issue. Bertand Russell, Kass reminds us, says of pragmatism that it "is like a warm bath that heats up so imperceptibly that you don’t know when to scream." He warns: "I would add that before we submerge ourselves irrevocably in amniotic fluid, we should take note of the connection to our own baths, into which we have started the hot water running." (Text. p. 624)

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