Imposing Genetic Diversity

Abstract

The idea that a world in which everyone was born "perfect" would be a world in which something valuable was missing often comes up in debates about the ethics of technologies of prenatal testing and preimplantation genetic diagnosis (PGD). This thought plays an important role in the "disability critique" of prenatal testing. However, the idea that human genetic variation is an important good with significant benefits for society at large is also embraced by a wide range of figures writing in the bioethics literature, including some who are notoriously hostile to the idea that we should not select against disability. By developing a number of thought experiments wherein we are to contemplate increasing genetic diversity from a lower baseline in order to secure this value, I argue that this powerful intuition is more problematic than is generally recognized, especially where the price of diversity is the well-being of particular individuals.

Imposing Genetic Diversity: An Imposition on Reproductive Freedom

“…Michelle J. Bayefsky, National Institutes of Health In his target article, Sparrow (2015) argues that we ought to be wary of our positive intuitions toward genetic diversity because they result in problematic conclusions when a "reversal test" is applied. The reversal test requires us to move from an imagined future to our present circumstances, and is used to "detect and compensate for the human tendency toward 'status quo bias'" (2).…”

Human Biodiversity Conservation: A Consensual Ethical Principle

“…Indeed, much of the ethical infrastructure of policies, laws, and agreements guards against citizens enacting judgments about who is "worst off," "the best," or "perfect," particularly when such judgments are assumed to be self-evident and mutually agreed upon (GarlandThomson 2015;Sandel 2007;Sparrow 2015). Groups or individuals who have historically been discriminated against on the basis of prejudicial judgments are most assiduously protected against continuation and enactment of those value judgments.…”

“…To consider as an ethical premise that "it would be better if another child were born instead," or that people have a moral obligation to produce the "best child possible" (3), or to reduce human diversity to a series of diagnostic categories that sputter out in "et cetera," or to understand someone's existence as an antidote to someone else's boredom, or to advocate for policy and practices based on speculating how we would experience inhabiting another person's body, or to evaluate whose lives "are only barely worth living" (8) are all foundational concepts of eugenics (Sparrow 2015). Eugenics uses modern technologies to supposedly improve the human race through selective reproduction, so-called enhancement, and selective elimination.…”

“…The "case for conserving disability" under discussion in the target article (Sparrow 2015) is most accurately expressed not as an imposition but as a consensual ethical principle. My "case" rests on the premise that the shape of the material world we build and occupy together expresses and determines who inhabits human communities.…”

The Disability Movement's Critique of Rehabilitation's Medical Model: A Rebuttal

“…First and foremost, we should be intent on improving the welfare of persons with disability rather than using them for improving others' social consciousness. Alternatively, insisting that prospective parents not abort a fetus with serious disability would seem to impose an unreasonable degree of moral obligation on them by insisting that they and their offspring live lives whose quality they may find acutely and chronically unpleasant [13]. In a related vein, rejecting the request of a person with disability to discontinue or withhold life-prolonging medical treatment because disability advocates believe it transmits a worrisome or politically incorrect message treats that person as an instrument of ideology rather than as an end in him-or herself.…”