- BIOETHICS FORUM ESSAY
Is Noninvasive Prenatal Genetic Testing Eugenic?
Before noninvasive prenatal screening becomes a routine part of gestational care, society needs to have difficult conversations about the ethical implications and establish a paradigm for truly informed consent in reproductive decision-making. These are admirable goals, set out in an article by Vardit Ravitsky in a special report on reproductive medicine published earlier this month by The Hastings Center, but the logic by which she reaches them is questionable.
Ravitsky argues that there are two rationales for widespread NIPT. One is reproductive autonomy, which values giving women maximum information to make informed choices. The other is public health, which sees NIPT as a way to reduce the societal burden of genetic disease. She sees the reproductive autonomy rationale as flawed because of the pressure on women to terminate certain pregnancies, but ultimately worthy of aspiration. In contrast, she argues, drawing from a disability rights framework and its eugenic overtones, “resisting the public health rationale as a basis for prenatal screening is ethically and pragmatically crucial.” I am not so sure.
In rejecting the public health rationale so fervently, Ravitsky gives great weight to the argument in disability rights literature that NIPT is morally questionable because it leads to a high rate of termination of fetuses with certain genetic disorders, which sends the message to those living with those disorders that their lives are not with living. The problem with this argument is that it appears to apply with the same force against any kind of discretionary abortion.
Abortions are not and never will be obtained randomly. Some identifiable groups of fetuses (e.g., those conceived by young, unmarried, poor women) are more likely to be aborted than others. It is harder to raise a child if one is poor than rich, just as it is harder to raise a child with Down syndrome than without. But, of course, many women will still choose to have their child notwithstanding plausible reasons not to. In the same way that the termination of a fetus with a genetic disease after NIPT could send a message to those living with the disease that their lives are not worth living, the termination of a fetus because its mother is single could send a message to people who were born to single mothers that their lives are not worth living.
While elective abortion may be thought of most often as an issue of reproductive autonomy (as is NIPT), public health, cost saving, and even crime reduction arguments are made in its favor all the time. If Ravitsky’s articulation of the disability rights argument gets us to rethink widely available NIPT, then maybe we have to rethink widely available abortion.
The public health rationale for NIPT can be justified as an effort to cure disease. Cancer sufferers, of course, are not insulted by efforts to cure cancer, nor do they critique such efforts as erasing important diversity of experience and motivated by discrimination against them personally. The distinction between curing cancer and screening for genetic diseases is that cancer, if cured, would be cured in the same people that it currently afflicts. People with cancer would certainly object to their own elimination to make way for a new generation genetically immune to cancer. But, thank God, no one is proposing eliminating people with Down syndrome. Rather, widely available NIPT would lead to relatively fewer children being born with Down syndrome. The analogy in the cancer context would be the development of genetic engineering that would make cancer impossible in future people but would not cure the people who currently have it. I can’t see the cancer sufferers objecting.
There is, in my opinion, a plausible argument to be made that NIPT with the stated public health goal of limiting the incidence of genetic disorders in the population is closer to a cure than an assault on personhood (although some very smart people disagree with my premises). The argument is best made by example. A committed couple is planning to have a child, and prepares to do so (chooses a name, decorates the room, etc.). They conceive, and upon realizing the child will have Down syndrome aborts the fetus and soon thereafter conceives again, giving birth to a child with the same name, family relationships, peer group, social position, and approximately half of the same genes, but without Down syndrome.
If we assume that embryos are not themselves persons, there is no obvious reason why we have to assume that two genetically and numerically distinct embryos are different persons in a morally meaningful sense. If narrative or social identity is what we care about when we think about personhood, one could look at the story I just told as one of a single person, being cured of Down syndrome. In this way, the public health-motivated use of NIPT could lose its eugenic associations and be seen as the straightforward curing of disease.
Finally, turning to the issue of reproductive autonomy, Ravitsky is worried that widely available NIPT, in the absence of some kind of perfect-to-the-point-of-utopian informed consent mechanism, would put pressure on women to abort genetically abnormal fetuses and in so doing make women the unwitting warriors of a eugenic project. But the alternative she proposes, taking into account the disability rights critique, inevitably does the same thing.
The disability rights critique attaches some moral opprobrium to terminating fetuses based on their genetic diseases. That is its entire point. Any paradigm that takes it into account puts moral pressure on women, who could otherwise choose to terminate their pregnancies for any or no reason, not to terminate after learning that their child will have particular genetic abnormalities. This makes those women the unwitting warriors in an effort to ensure a certain distribution of genotypes in the pool. It may not be classical eugenics, but it is a eugenic project just the same.
James Toomey is a second-year law student at Harvard Law School.