Since the 1970s, prenatal testing has been integrated into many health care systems on the basis of two competing and largely irreconcilable rationales. The reproductive autonomy rationale focuses on nondirective counseling and consent as ways to ensure that women's decisions about testing and subsequent care are informed and free of undue pressures. It also represents an easily understandable and ethically convincing basis for widespread access to prenatal testing, since the value of autonomy is well established in Western bioethics and widely (...) recognized by funders of health care. In contrast, the public health rationale approaches prenatal testing as designed to reduce the incidence of certain conditions in the population to reduce the burden of disease. This rationale emphasizes the societal consequences of reproduction and the aggregate impact of women's individual reproductive decisions on the overall health of future populations. In this essay, I argue that, despite what could be seen as a persistent failure to meet the ideals of reproductive autonomy, resisting the public health rationale as a basis for prenatal screening is ethically and pragmatically crucial. I recommend policy mechanisms that can enhance reproductive autonomy at a societal level to support choice at the individual level. (shrink)

In a project The Hastings Center is now running on the future of prenatal testing, we are encountering clear examples, both in established law and in the practices of individual providers, of failures to respect women's reproductive autonomy: when testing is not offered to certain demographics of women, for instance, or when the choices of women to terminate or continue pregnancies are prohibited or otherwise not supported. But this project also raises puzzles for reproductive autonomy. We have learned that some (...) clinicians and patients do not discuss the fact that prenatal testing can lead to a decision about whether to terminate a pregnancy—they just don't talk about it. And while the decision whether to agree to prenatal screening and diagnostic testing is to be made with women's free and informed consent, many screening tests have been routinized in such a way that some women do not even recall agreeing to testing, while others feel that agreeing to testing is what their clinicians expect of them or that the testing is necessary to protect themselves and their families from the significant financial hardship of raising a child with a disability. In the face of these pressures, can one really say that women are freely choosing to undergo testing or are freely choosing to continue or terminate a pregnancy following receipt of test results? The reality of these pressures is requiring us to consider expanding the scope of our investigation beyond the clinical encounter to the broader context—to think harder about what reproductive autonomy means and how best to enhance it. (shrink)

According to the expressivist argument the choice to use biotechnologies to prevent the birth of individuals with specific disabilities is an expression of disvalue for existing people with this disability. The argument has stirred a lively debate and has recently received renewed attention. This article starts with presenting the expressivist argument and its core elements. It then goes on to present and examine the counter-arguments before it addresses some aspects that have gained surprisingly little attention. The analysis demonstrates that the (...) expressivist argument has a wide range of underpinnings and that counter-arguments tend to focus on only a few of these. It also reveals an important aspect that appears to have been ignored, i.e., that people do not select foetuses based on chromosomes or other biological traits, but based on characteristics of living persons with specific disabilities. This makes it more difficult to undermine the claim that negative selection of foetuses expresses a disvaluing of persons with such disabilities. It leaves the expressivist argument with a strong bite still. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.