Prenatal Testing and Human Capabilities

By Aobo Dong

According to Vardit Ravitsky’s paper on “Shifting Landscape of Prenatal Testing,” there exist two competing rationales for prenatal screenings for severe disabling conditions like Down syndrome. The “reproductive-autonomy” rationale justifies screening by invoking a woman’s individual autonomy. In contrast, the “public health rationale” justifies pre-natal screening and termination due to a Down syndrome diagnosis by invoking the costly public health expenditures that must be spent on children born with these disabilities – resembling a utilitarian calculation that minimizes pain and maximizes pleasure for society as a whole. According to Ravisky, the public health rationale creates social pressure that incentivizes women and their families to make the decision to terminate. Thus, the public health rationale is heavily pro-termination, while the individual autonomy rationale could lead women to make decisions in either way. What she proposes as a solution is to combat the public health rationale to allow women to make autonomous decisions free of social pressures, and establish a stronger “informed consent” procedure that better informs the implications of pre-natal screenings and Down syndrome so that women could make the best possible decision for themselves. This blog post will shed more light on this issue by invoking Martha Nussbaum’s capabilities approach to human rights.

A central feature of the capabilities approach is “adaptive preference” that measures the relative success in achieving the 10 core capabilities cross nation-states and social classes. Nussbaum is aware of the fact that “individuals vary greatly in their need for resources and in their ability to convert resources into valuable functioning.” Therefore, it is not even adequate to provide an equal amount of educational resources for one student with Down syndrome and another without any learning disability. Nussbaum would argue that the child needs something even more than a formal education, a proposal that could be much more costly than a regular education alone. She would not assume that a student with the condition must have a low self-worth; instead, she would consider the factors in the child’s social environment that may have caused such low self-esteem, and direct resources to improve the child’s own sense of worth and maximize her future potentials in living a fully human life. This is consistent with capability 7B (respect), which stresses their ability to “be treated as a dignified being whose worth is equal to that of others.”

Given her compassionate position toward the disability community, how might she respond to the moral dilemmas arisen when two or more central capabilities from her list conflict with each other and jeopardize the potentials of this vulnerable population? More specifically, what happens when the capabilities of the unborn directly conflict with those of their mothers? In this case, a fetus with Down syndrome may, hypothetically, desire to be born in order to experience human life. This demand can be justified under the capability #1, life, since it states that one should be able to live a life that is not “so reduced as to be not worth living.” Or, it can also be justified under #7 on respect, which states one’s capability “to be treated as a dignified being with equal worth to others.” However, the mother that carries the fetus has the capability to make her own “choice in matters of reproduction,” in accordance with capabilities #3, bodily integrity.

In an article Nussbaum co-authored, the issue of abortion and the capabilities approach is discussed. The paper clearly states that a fetus possesses a type of human dignity and moral standings under the capabilities approach; however, “a fetus cannot be said to have a ‘right to life’ unless, from a normative perspective, a woman is also under a corresponding duty to provide such affirmative support.” And such a duty cannot be reasonably imposed on a woman if it violates a woman’s own dignity by undermining her physically and psychological health. Although the paper never discusses the case of terminating pregnancy with severe disabilities, it does discuss a comparable case – sex-selective abortion, which the authors believe affects human capabilities in both instrumental and intrinsic ways:

“Instrumentally, such abortions serve to perpetuate denigrating stereotypes of the worth of female life; and also, in many cases, to reinforce gender-based hierarchies in social and economic life. Intrinsically, they constitute a statement that expresses the unequal worth of female life, and they also constitute a type of discrimination…”

If we substitute “female life” with “the life of an individual with Down syndrome,” and maintain the structure of sentence, we may yield some insight on terminations based on Down syndrome. Instrumentally, abortions due to Down syndrome perpetuates denigrating stereotypes of those with this condition, and intrinsically, they express the unequal worth of the life of an individual with Down syndrome. Therefore, the capabilities approach does recognize the discrimination inherent in abortions specifically aimed at eliminating a fetus with Down syndrome. The fetus’ human worth is not respected, when the mother bears no physical or psychological risks or trauma to deliver the child.

This analysis also raises the question: how should we apply the capabilities approach when the interests of individual women may conflict with the disability community at large? Instrumentally, the disability community may not wish to be regarded as a burden to society or a mistake. Under capability 7 on affiliation, friendship and respect are crucial. To protect this capability means “protecting institutions that constitute such forms of affiliation, and also protecting the freedoms of assembly and political speech.” Therefore, when many choose to terminate their pregnancy based on such reasons, it sends a signal to the community that they are not desirable. This is not to even mention a possible outcome in which the entire community of people with the condition could no longer sustain itself or exist at all, depriving numerous central capabilities from those who are left behind and forgotten. As time goes on, more countries might follow Iceland’s footsteps in virtually eliminating the entire Down syndrome population. The public health rationale constitutes a formidable social force against disability communities. Perhaps, the capabilities approach to human rights could counter such social pressures by reframing the debate in an alternative ethical paradigm.

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