This post is a part of our Bioethics in the News series. For more information, click here.
By Leonard Fleck, Ph.D.
In a recent story in the New York Times, Gina Kolata reports the story of Amanda Kalinsky, age 30, who had been told four years ago that she had the gene for Gerstmann-Straussler-Scheinker [GSS] disease. This is a very rare neurological disorder that will result in a slow and terrible death, likely before she is fifty years old. Her father was dying of this disorder at that time. She very much wanted to have children but she could not bear the thought of passing on GSS to them. She had then learned of the option of pre-implantation genetic diagnosis [PGD]. This involved her being given a drug causing her to hyperovulate. Multiple ova would be surgically removed from her, inseminated by her husband, and result in the creation of 12 embryos. Over two days those embryos would grow to the eight-cell stage, at which point a cell would be removed from each and genetically analyzed for the GSS mutation. Six of her embryos had the GSS mutation. Those embryos were discarded. She successfully bore twins free of GSS and another child, also free of GSS. She and her husband paid over $20,000 for PGD.
Ethically speaking, how should individuals who wish to be just and caring and genetically responsible think about this procedure? How should citizens in a liberal, pluralistic society think about PGD? Should this be a covered benefit under the Affordable Care Act, at least for couples who know they are at risk of having a child with a serious genetic disorder that could very adversely affect the length or quality of life of a future possible child?
Advocates for a Right to Life position would surely object because the procedure necessarily involves the destruction of genetically flawed or excess embryos. They would further object to paying taxes to support access to the procedure for couples like the Kalinskys because this deeply violated their conscientious beliefs. The same is true for many advocates for persons with disabilities who regard this procedure as necessarily diminishing the value of persons with disabilities. Should we have a public policy that would ban this procedure, period?
Let me suggest two responses to the objections that have been raised. And let me also suggest why we should have a policy that would publicly subsidize the cost of the procedure for couples like the Kalinskys. First, what is being disvalued is the disability itself, not persons with disabilities. This can be understood more clearly with a brief thought experiment. Imagine that in the future regenerative medicine is able to use modified embryonic stem cells to restore mobility to individuals who have suffered severe spinal cord injuries. The cost of the procedure might be $100,000. I would argue that a just and caring society ought to underwrite that cost. Some persons with quadriplegia might refuse the procedure. Many others might gratefully accept it. There would be fewer immobile individuals in the world, but it surely seems that would be a good thing from the point of view of those newly mobile patients.
Advocates for a Right to Life position might argue that if a couple knows they are at risk for having a child with, say, cystic fibrosis, they ought either forego having children or accept having a child with cystic fibrosis. A child with cystic fibrosis may have lifetime medical costs in excess of $1 million, not to mention diminished length and quality of life. Those costs will largely be socially borne, as opposed to being borne by the parents. I would argue that the social acceptance of these costs is what a just and caring and liberally respectful society ought to do. However, others might see this a bit differently.
Others might regard such a couple as being thoughtless and irresponsible, both because of the preventable harm they are imposing on that child and the costs that are imposed on society. I would argue that such thoughts are illiberal. Those choices ought to be respected. But if that is true, then a liberal society is nothing if not mutually respectful. In other words, an advocate of a Right to Life position as well as advocates for persons with disabilities ought to respect the Kalinsky’s right to make their choice not to have children with GSS. Further, such advocates should also accept a democratically-legitimated policy that would pay the costs of PGD for couples like the Kalinskys, especially those not as economically well off as the Kalinskys. In both cases advocates for either point of view are paying taxes to support services they judge to be conscientiously troubling. But this is what mutual respect and fair treatment often means in a liberal pluralistic democratic society.
Perhaps I am wrong in my judgments here; perhaps advocates for a Right to Life position are wrong. If we both righteously insist on our rightness, then the practical consequence will be unnecessary suffering and premature death for many future possible children. Perhaps the better choice would be mutual respect and continued efforts at mutual understanding.
References:
Kolata, Gina. “Ethics Questions Arise as Genetic Testing of Embryos Increases.” New York Times 03 Feb 2014. Retrieved from http://www.nytimes.com/2014/02/04/health/ethics-questions-arise-as-genetic-testing-of-embryos-increases.html?hp&_r=3
Related reading:
- “To Catch a Killer Gene: Sisters Race to Stop Mystery Disease” via NBC News
- “Family With a Risk of Cancer Tries to Change Its Destiny” via The Wall Street Journal
Leonard Fleck, Ph.D., is a Professor in the Center for Ethics and Humanities in the Life Sciences at Michigan State University and the author of Just Caring: Health Care Rationing and Democratic Deliberation.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, March 6, 2014. With your participation, we hope to create discussions rich with insights from diverse perspectives. You must provide your name and email address to leave a comment. Your email address will not be made public.
MSU Bioethics 
A point of clarification is needed. The article seems to imply that in a just and caring society, cost would never become a consideration in whether society should be willing to respect the reproductive decisions of parents. But as the article’s author has argued persuasively in the case of personalized medicine and cancer, cost does need to be taken into consideration in ways that will limit individual choice. There, he argues that allocation decisions need to be a matter of democratic deliberative processes. So, the question I have here is, would this same logic prevail not only in regard to reproductive choices but also regarding premature infants beyond a certain level of prematurity? That is, does cost matter here as well and should democratic deliberation establish regulations which might limit individual choice?
Dr. Ortmann:
You actually raise several questions, and some of them would require a long essay to answer. But I will try for a succinct response. First, with regard to the focus of the essay itself, there will be numerous circumstances in which public payment for access to PGD will both save societal resources, represent a more just state of affairs, and respect parental procreative liberty. I have in mind costly genetic disorders that will manifest themselves relatively early in the life of a child, such as cystic fibrosis. For an investment of $40,000 for PGD social resources in excess of $1 million will be saved. Such savings are less certain in the case of later in life genetic disorders, such as BRCA1, where the lifetime risk of breast cancer might be 45—85%, depending upon lots of unknown factors. In that case (several decades into the future) there could be medical interventions that might be curative, in which case the front-end costs of PGD might not yield net savings for society. So then we do need to think more carefully (given limited resources and unlimited health care needs) about how high a priority (from a health care justice perspective) funding PGD for late in life genetic health vulnerabilities ought to be. There is not an easy or morally obvious answer to that question, which is why we can utilize a fair and rational process of democratic deliberation to get an answer with moral and political legitimacy.
As for very premature infants (less than 25 weeks gestation and less than 700 grams), most of these infants will have a very poor prognosis, i.e., they will not survive in spite of best medical efforts. Parents need to be apprised of that, difficult as that no doubt is. But there is enormous medical uncertainty as to the fate of any particular baby in these circumstances, so parental choices should largely be respected, despite the ultimate costs to society. But there are other birth disorders that are so incompatible with prolonged meaningful life (anencephaly, Trisomy-13, Trisomy-18, other gross brain malformations) that comfort care alone is warranted, both from the perspective of health care justice and the non-interests of these unfortunate infants). I would argue that it would be reasonable to endorse through rational democratic deliberation a societal policy of providing comfort care only to these last-mentioned infants, then using those saved resources to provide the costly social support that many very premature infants will need who survive with substantial mental and physical deficits. I would see a response such as that as being as just and caring as possible in otherwise tragic circumstances. Len Fleck
Doctor Fleck,
Thank you for your reply. You have not shrunk from discussing the extremely fraught issue of allocating scarce medically resources, and you have done so in way that balances personal caring and economic conscientious.
Leonard Ortmann