Informed consent is a central concept for empirical and theoretical research concerning pregnancy management decisions and is often taken to be one of the more fundamental goals of the profession of genetic counseling. Tellingly, this concept has been seen by disability communities as salutary, despite longstanding critiques made by disability activists, advocates, and scholars concerning practices involved in genetic counseling more generally. In this chapter, we show that the widespread faith in informed consent is misleading and can be detrimental to (...) the practice of genetic counseling as guided by concerns of justice and equity. We proceed in two steps. First, we explain how informed consent is flawed as a practical concept. Second, we show how the inadequacy of informed consent illuminates the animating core of disability critiques of genetic counseling: the issue of ableism. We argue that the problem of ableism cannot be solved with informed consent because it is not merely a problem of information, but also of epistemic schemas. We suggest that what we call critically informed consent is better suited to move genetic counseling from being aware of the problem of ableism to becoming actively anti-ableist. (shrink)

The healthcare system—the assemblage of hospitals, insurers, professional associations, policymakers, patients, caregivers, and other entities oriented toward health in the United States—does more than cure illness. It is, and in some cases ought to be but falls short, attentive to endpoints other than cure, such as comfort, participation in desired activities, and the creation of families—things that may broadly be understood as promoting well-being. In the United States, health care utilization is prohibitively expensive. As a result, most people can only (...) access care through insurance. While the care available within the broad U.S. healthcare system may be oriented toward a wide variety of endpoints, insurance... (shrink)

Transgender people and issues have come to the forefront of public consciousness over the last year. Caitlyn Jenner' very public transition, heightened media coverage of the murders of transgender women of color, and the panicked passage of North Carolina's “bathroom bill”, mean that conversations about transgender health and well-being are no longer happening only within small communities. The idea that transgender issues are bioethical issues is not new, but I think that increased public awareness of transgender people and the ways (...) that their health is affected by systems that bioethics already engages with offers an opportunity for scholarship that works to improve transgender health in meaningful ways. (shrink)