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)

If I told you that screening technologies are iteratively transforming how people experience pregnancy and early parenting, you might take notice. If I mentioned that a new class of newborn patients was being created and that particular forms of parental vigilance were emerging, you might want to know more. If I described how the particular stories told about screening in public, combined with parents’ fierce commitment to safeguarding their children’s health, make it difficult for problematic experiences with screening to translate (...) into negative opinions about it, you would most likely be intrigued. An extensive qualitative literature documents all these social phenomena, and more, in connection with the spread of prenatal and newborn screening. So why is it, then, that commentators frequently assert that the predicted psychosocial impact of increased screening and testing associated with “the genomic revolution” has been far less severe and worthy of attention than predicted? How can or should social science “evidence” that sits outside adopted measurement conventions be considered? Why is it that summary statements about the psychosocial impact of genomic information often ignore qualitative evidence, or sideline it as relevant only for improving communication among patients, clinicians, and public health systems? This essay addresses such questions, using qualitative research on prenatal and newborn screening as a case study for illustrating the broad methodological, ideological, and dialogical issues at stake. (shrink)

In this essay, we explore consequences of the systemic failure to track and to publicize the prevalence of patient‐safety threats in American medicine. Tens of millions of Americans lose trust in medical care every year due to safety shortfalls. Because this loss of trust is long‐lasting, the corrosive effects build up over time, yielding a collective maelstrom of mistrust among the American public. Yet no one seems to notice that patient safety is a root cause, because no one is counting. (...) In addition to identifying the origins of this purblindness, we offer an alternative policy approach. This would call for government to transparently track safety threats through the systematic collection and reporting of patients’ experiences. This alternative strategy offers real promise for stemming the erosion of trust that currently accompanies patient‐safety shortfalls while staying consistent with Americans’ preferences for a constrained government role with respect to medical care. (shrink)

Self‐trust is essential to the well‐being of people with chronic illnesses and those who care for them. In this exploratory essay, we draw on a trove of health narratives to catalyze examination of this important but often overlooked topic. We explore how self‐trust is impeded at both personal and structural levels, how it can best be nourished, and how it is related to self‐advocacy. Because people's ability to trust themselves is intrinsically linked to the trust others have in them, we (...) pay particular attention to the role that allies such as clinical professionals play in the development of self‐trust, highlighting the importance of eliciting patient narratives, of curious listening, and of compassionately raising questions. We also contrast the self‐trust paradigm with that of self‐management, which tends to replace the former's attention to patients’ experiences, abilities, qualities, or judgments with a professionally dominated discourse dedicated to addressing illness through behavior changes prescribed by clinicians. We close with a call to action, exhorting readers to focus on supporting self‐trust in health care settings and on creative research in this critical yet heretofore underrepresented domain. (shrink)