GENETICS, ETHICS, AND PHYSICIANS

GENETICS, ETHICS, AND PHYSICIANS Leonard M. Fleck, Ph.D. Michigan State University

TWO PREMISES • We are beyond the age of genetic innocence • We have entered (and cannot exit) the age of genetic responsibility • [Philip Kitcher, Lives to Come: The Genetic Revolution and Human Possibilities

BACKGROUND • Genetic tests are different (in morally important ways) from non-genetic tests • Popular belief in genetic determinism; our genome represents “coded future diary” • History of eugenics • Risks of genetic discrimination [health care and employment] • Links to reproductive decisions

LEVELS OF MORAL JUDGMENT • Personal • Professional • Social (public policy)

VALUES • Genetic Privacy • Procreative Liberty • Genetic Responsibility (personal) • Genetic Responsibility (social) • Best Interests of Future Possible Children • General Welfare of Society • Health Care Justice

VALUES • Obligations to do no Harm • Respect for Incipient Human Life • Respect for Persons with Disabilities • Non-Discrimination • Respect for Cultural and Religious Differences

DOMAINS OF MORAL ACTION • Domain of Moral Obligation: things we either MUST do or MUST REFRAIN from doing (forbidden actions) • Domain of Moral Permissibility: things we are free to do or refrain from doing without fear of moral criticism • Domain of Moral Ideals: conduct worthy of the highest moral praise (saintly action)

CASE • A couple knows they are at risk for having a child with cystic fibrosis (or Fragile X Syndrome • They want to have a child of their own, but they do not wish to impose this risk on the child • They want your help in accessing a non-standard form of reproduction

QUESTIONS • Should this couple be morally commended for making a difficult, but genetically responsible decision? That is, are they to be commended for trying to avoid (at expense and burden to themselves) imposing unnecessary suffering on this future possible child?

QUESTIONS • Should this couple be morally criticized for making a decision that is invidiously discriminatory? That is, are they saying by their actions that they wish to reject a child with a serious genetic disability because they would prefer a more perfect child?

QUESTIONS • Should a good doctor acquiesce to the request of this couple for access to alternate reproductive options because their request is within the moral bounds of procreative/ genetic liberty? • If so, what sorts of choices would you see (as a physician) as beyond the bounds of procreative/ genetic liberty?

QUESTIONS • Is the decision of the couple in this case really a matter of genetic privacy? That is, is their physician morally obligated (as a physician) to be absolutely neutral regarding their choice----do no more than advice them of reproductive options, then facilitate access?

QUESTIONS • If this couple wanted to access pre- implantation genetic diagnosis so that they could choose an eight-cell embryo that was free of a particular genetic defect, would you see this as a morally permissible option, given the number of embryos that will be discarded?

MY RESPONSE • Morally speaking, choosing PGD should be thought of as a matter of procreative liberty. • Parents are not violating the rights of anyone (from a secular perspective) • Parents intent is to act in the best interests of a future possible child • No obvious social harm in permitting parents to make such choices

MY RESPONSE • To understand the moral logic behind my claim, imagine a couple where the woman was exposed to a virus with potentially teratagenic effects for an early pregnancy. Her physician advises the couple to have only protected sex for 3 months (which they do,conceiving a child 5 months later. They chose an unaffected rather than an affected child, which is morally unobjectionable.

MY RESPONSE • NOTE: There are major moral virtues for ALL attached to the permissibility of PGD: • Couples who refuse PGD are not open to moral criticism, so long as they have been thoughtful and are prepared to accept the consequences • Society would be open to moral criticism if we reduced access to needed health care or related supportive services for affected children as a way of “discouraging prospective parents from making bad genetic decisions.”

Professional Ethics and PGD • I would argue that it would be morally wrong for a physician to fail to inform a couple concerned about the conception of a child with a serious genetic disorder of the option of PGD. • Note: If this physician has personal moral objections to PGD, he has no obligation to make a referral. BUT he may not deny this couple the medical information they need to make an informed choice.

Social Policy and PGD • It is very difficult to imagine what would justify a restrictive or prohibitive policy with regard to PGD in a liberal pluralistic democratic tolerant society. No public interest is threatened by the option. • A socially harder question is whether a society could rightly encourage use of PGD through public educational efforts or through explicit social subsidies.

QUESTION • There are some couples who are both dwarves or both deaf. They seek to use PGD to choose an embryo that will be either deaf or a dwarf like themselves. Is such a use of this technology as morally permissible as using it to avoid having a child with Tay Sachs or Huntington’s or fragile X or cystic fibrosis etc.?

QUESTIONS • If the cost of a successful pregnancy via PGD is about $40,000, would you work with other physicians to see to it that such costs are covered either by private insurance or through a public financing mechanism? That is, do you see such funding as a matter of social justice?

Justice and PGD • Claim #1: A justice argument can be made for public funding for PGD for couples at risk of having children who would otherwise be have serious genetic disorders manifesting themselves from birth on. • Claim #2: No justice argument will support PGD for couples at risk of having children with mid-life to late life genetic disorders.

Justice and PGD • Claim #1: Justice arguments support PGD for early onset genetic disorders because of: • Protecting fair equality of opportunity for these future possible children • Protecting net welfare of these children, preventing genetic harms that would reduce both length and quality of life • Efficiency reasons: social costs of PGD are quickly paid for through reduced health care needs of these children

Justice and PGD • Claim #2: Justice does not require PGD for late in life genetic disorders because: • The causal connections to effecting the disorder are too uncertain (except for HD) • Medicine may produce cheap genetic interventions over the next several decades to minimize actualization of these genetic risks • Efficiency arguments speak against PGD for later disorders since large costs are up front and savings are uncertain and very far in the future.

Justice and PGD: Criticisms • Health care justice is about NEEDS. But parents at risk of having a child with CF or Tay Sachs or Lesch-Nyhan do not NEED to have children. Alternatively, they do not NEED to have children that are genetically their own. They have the option of cheaper alternative reproductive methods, such as sperm or ova donors.

Justice and PGD: Criticisms • Ordinarily health care needs belong to a person who is actual and who is suffering and whose suffering could be relieved though available health therapies. But PGD involves a metaphysically odd situation in that we meet the alleged health need by REPLACING one future possible person with a different future possible person lacking some specific genetic vulnerability.

Justice and PGD: Criticisms • An implication of the last criticism is that it would be morally permissible (not unjust) for society to provide resources for PGD in the case of early-onset genetic disorders. BUT this is not morally equivalent to saying that such social assistance is morally REQUIRED as a matter of justice. There may be too many other health care needs that make stronger claims of justice on limited social resources.

Justice and PGD: the Disability Critique • PGD does not represent a threat to the rights or interests or dignity of persons with disabilities. The disability is dis-valued not the person with it. • Imagine successful embryonic stem cell research to repair devastating spinal cord injuries. Vast majority of SCI patients might readily embrace such a therapy, and we would be wrong to withhold it from them on grounds that this represented disrespect for persons with disabilities. Justice would REQUIRE funding this therapy for all desiring it.

Justice and PGD • Note 1: No social policy ought to require couples at risk of having a child with a serious genetic disorder either to use PGD or to refrain from having children. This is a clear implication of our social commitment to political liberalism. • Note 2: A just liberal society must provide social resources needed to maintain fair equality of opportunity for children born with serious genetic disorders.

Justice and PGD • Note 3: Couples who choose to avoid using PGD for religious or philosophic reasons (though at risk for having children with serious genetic disorders) must extend the same respect to couples who would use PGD in a liberal society, or who would advocate public funding for this technology.

Justice and PGD • Note 4: A JUST liberal society is one in which there are fair terms of cooperation, which is what is expressed on Note 3. A liberal society is one in which there is MUTUAL RESPECT for diverse reasonable conceptions of what it means to lead a goods life. • Note 5: Such mutual respect will be increasingly necessary for a peaceful liberal society in which genetic reproductive interventions become increasingly pervasive.

Physicians and the Future • Physicians will have to play a critical role in the social education and social conversations necessary to think through the ethical and public policy options that become available with advances in genetic technologies. • Physicians will be critical to protecting the liberal foundations of our society, most especially the patterns of mutual respect needed for maintaining just policies and social practices in these matters.

FANCONI’S CASE • A couple has a child with Fanconi’s anemia. This child will die without a well matched bone marrow transplant. They wish to conceive via pre-implantation genetic diagnosis to identify a well-matched donor/ future child embryo. Q: Is it morally permissible for good doctors to assist couples in achieving this objective?

The FUTURE: Embrace It? • It took about 12 years to complete a map of the entire Human Genome. But a researcher at MIT is working on a technique for “uncoiling” an individual’s DNA and having it machine-read in about three hours at a cost of about $1000. Is this a technology physicians and society at large should welcome? Why or why not?

GENETICS, ETHICS, AND PHYSICIANS