Debates about expanding newborn screening with whole genome sequencing are fueled by data about public perception, public opinion, and the positions taken by public advocates and advocacy groups. One form of evidence that merits attention as we consider possible uses of whole‐genome sequencing during the newborn period is parents’ (and children's) diverse experiences with existing expanded screening protocols. What do we know about this experience base? And what implications might these data have for decisions about how we use whole genome (...) sequencing and how we assess its impact in the future? Although the broader literature on genetic susceptibility testing suggests that testing usually does not have adverse effects on children's psychosocial well‐being, certain newborn screening results have been demonstrated to cause distress, alter behavior, and even to influence the formation of new parental and family identities. (shrink)

The expanded use of genetic testing raises key ethical and policy questions about possible benefits and harms for those receiving disease‐risk information. As predictive testing for Huntington’s was initiated in a clinical setting, survey research posing hypothetical test scenarios suggested that the vast majority of at‐risk relatives wanted to know whether they carried a disease‐causing mutation. However, only a small minority ultimately availed themselves of this opportunity. Many at‐risk individuals concluded that a positive test result would be too psychologically overwhelming. (...) A substantial literature suggests that individuals are often more resilient than anticipated in coping with many different health‐related stresses. Much of my own work in the field has been through the Risk Evaluation & Education for Alzheimer’s Disease study (REVEAL), a series of randomized clinical trials assessing the impact of genetic susceptibility testing on asymptomatic individuals at risk for Alzheimer’s disease. Our experience in developing and implementing four successive, multisite trials provides some potentially useful lessons for the field. More people will be asking for their personal genetic information. Better understanding will help us decide when access is appropriate and how best to disclose results in a manner that supports adjustment to test findings and promotes use of genetic information to improve human health. (shrink)

One of the most enduring criticisms of John Dewey's political thought is that it is unsuspicious of power. This essay responds to this critique by advancing the claim that power is an integral but implicit element of Dewey's conception of human experience. Given Dewey's indirect treatment of power, this essay has two primary tasks. First, it reconstructs and develops an explicit conception of power for Deweyan pragmatism. Second, it evaluates the extent that Dewey's political and social philosophy is able to (...) criticize power relations. Taken together, I aim to provide a more coherent and realistic defense of the political dimensions of Dewey's democratic theory. This defense moves Deweyan pragmatism toward a democratic politics that neither elides conflict nor evades power. (shrink)

Driven by an impetus to standardize, numerous checklists have been devised to address quality in qualitative research, but these standards and the mindset driving them offer no language with which to speak about taste, or the aesthetic sensibilities that play such a key role in evaluating the goodness of any object. In this article, quality appraisal in qualitative research is considered in the context of taste, that is, in the discernment involved in judging the value of research and in the (...) recognition of the key role reviewer preferences, sensibilities and membership in one or more taste communities play in these judgements. The evaluation of a study is accomplished by evaluating one or more reports from that study, and such reports may be conceived as art forms amenable to the same criteria for appraisal as poems or paintings. Taste implies judgements about the quality of objects and a person's ability to sift through and select from a store of knowledge that knowledge appropriate to judge its value. What binds a community of practitioners (here reviewers of qualitative studies) together is taste‐making, or the constant refinements of judgements concerning what constitutes good and bad practice. (shrink)