Community engagement and participatory research have been appropriately employed to increase the relevance, rigor, and acceptability of all types of research, but these approaches may be particularly important in genomics and biomedical research on sensitive traits such as neurodevelopmental, psychiatric, and behavioral ones. Here, we provide an overview of past and ongoing efforts in community engagement in genomics studies and consider successes and opportunities for further improvement. Informed by this knowledge as well as one of the author's experiences, we set (...) out a vision for a more equitable and collaborative genomics where wider communities, including social, ethnic, and other communities that share a particular trait, are included in the research as peers and collaborators, not solely as objects of study. (shrink)

Disagreement about the properattitude toward disability proliferates. Yetlittle attention has been paid to an importantmeta-question, namely, whether ``disability'' isan essentially contested concept. If so, recentdebates between bioethicists and the disabilitymovement leadership cannot be resolved. Inthis essay I identify some of the presumptionsthat make their encounters so contentious. Much more must happen, I argue, for anydiscussions about disability policy andpolitics to be productive. Progress depends onconstructing a neutral conception ofdisability, one that neither devaluesdisability nor implies that persons withdisabilities are inadequate. So, (...) first, I clearaway the conceptual underbrush that makes usthink our idea of disability must bevalue-laden. Second, I sketch someconstituents of, and constraints upon, aneutral notion of disability. (shrink)

It is widely assumed that disability is typically a bad thing for those who are disabled. Our purpose in this essay is to critique this view and defend a more nuanced picture of the relationship between disability and well-being. We first examine four interpretations of the above view and argue that it is false on each interpretation. We then ask whether disability is thereby a neutral trait. Our view is that most disabilities are neutral in one sense, though we cannot (...) make simple generalizations about disability's relationship to well-being in other important senses. After defending this view, we discuss its practical implications for selective abortion for disability, nondisabled people's interactions with disabled people, and the use of QALYs in health policy. (shrink)