The Consequences of Newborn Genetic Screening
Mara Buchbinder, Stefan Timmermans (UCLA)
This project examines how clinicians, patients, and families work to align the promise of medical technologies as formulated in the policy arena with the realities of their implementation in the clinic. Our book, Saving Babies? The Consequences of Newborn Genetic Screening (University of Chicago Press, 2013), examines the recent expansion and standardization of state-mandated newborn screening programs in the United States. Drawing on three years of ethnographic research in a California metabolic-genetics clinic (2007-2010), we describe how parents and geneticists together resolve multiple diagnostic, prognostic, and epistemic uncertainties associated with the introduction of new screening technologies. We argue that, contrary to the position of vociferous advocacy groups, newborn screening cannot on its own save lives. Many other factors must be in place for the putative “benefits” of newborn screening to be realized, and these benefits come with a host of unanticipated consequences—such as deeply ambiguous results and inadequate access to treatment—that have received far too little attention from policymakers. Therefore, newborn screening exemplifies the unsettling paradox of investment in high-tech medicine while ignoring the provision of more basic healthcare needs.
Gail Henderson (PI)
Social Medicine Collaborators: Jean Cadigan, Arlene Davis (CIs)
This is an NHGRI-funded study, also supported with funds from a national CTSA supplement. Using data from six case studies and a survey of 456 US biobanks, we describe organizational characteristics, policies and practices of US biobanks, and address broad ethical and legal concerns about 1) ownership, 2) informed consent, 3) data sharing and use, 4) security and confidentiality, 5) return of results, and 6) community engagement in the design and future direction of research. Guidelines, practice standards, and a variety of policies have been proposed for biobanks, but there is no unifying guidance in the US; thus biobank administrators face considerable challenges to developing appropriate practices and policies, a subject of a proposal we are currently developing.
The Technocratic Wish: Congress, Medicare and the Politics of Expertise
The 2010 Affordable Care Act contains a number of new policies designed to slow the growth in health care spending. Among these measures, the Independent Payment Advisory Board (IPAB) is an important innovation in Medicare policy. The IPAB is to be comprised by experts, insulated from politics, and empowered to recommend changes to Medicare if spending targets are exceeded. Why did Congress enact IPAB and how compelling is the case for it? How will IPAB work in practice? And what are the virtues and limits of this approach to containing Medicare spending? This project explores the politics of IPAB and issues of expertise and Congressional governance in Medicare and health policy.
Unfinished Journey: Health Care Reform in the United States
This book project explores the struggle over health reform during the past two decades, from the failure of the Clinton plan through the enactment of the Affordable Care Act (ACA). It analyzes the political obstacles that have made meaningful reform extraordinarily difficult to achieve and the strategies that reformers used to surmount those obstacles and pass the ACA in 2010. It also addresses challenges in implementing health reform, including controlling spending, enrolling eligible persons into coverage, and building political support.
North Carolina Memorial Hospital Oral History Project
Part public history, part pedagogical exercise, this is a collection of oral histories with the earliest workers at UNC Hospitals, back when it was called North Carolina Memorial Hospital upon establishment in 1952. Medical students in my history of medicine class conduct and edit the interviews. Transcripts will be stored and made publicly accessible thanks to the UNC Southern Oral History Program.