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Membership Recruitment and Training in Health Care Ethics Committees

June 29, 2017

This pilot study reports on a survey regarding recruitment, appointment, and training of members for health care ethics committees (HCECs). Background: Past studies have examined HCECs, but have focused on the roles of the committees and the broad make-up of membership. Thus, our study fills an important knowledge gap in trends of membership recruitment and … Read more

“Forward-Thinking” in U.S. Biobanking

March 15, 2017

Aims: Do biobanks enact policies and plans that allow them to anticipate and respond to potential challenges? If a biobank has one such policy or plan, is it likely to have more? Using survey data from 456 U.S. biobanks, we assess four possible indicators of such “forward-thinking.” Methods: We present response frequencies and cross-tabulations regarding … Read more

Which Results to Return

February 7, 2017

BACKGROUND: Advances in genomics have led to calls for returning information about medically actionable genes (MAGs) to patients, research subjects, biobank participants, and through screening programs, the general adult population. Which MAGs are returned affects the harms and benefits of every genetic testing endeavor. Despite published recommendations of selection criteria for MAGs to return, scant … Read more

Public Comments on Proposed Regulatory Reforms That Would Impact Biospecimen Research

December 20, 2016

The regulations governing human subjects research (Common Rule) remain largely unchanged since their adoption. As a first step in their revision, the federal government published the Advance Notice of Proposed Rule Making (ANPRM) in 2011. The public responded with over 1100 comments. We selected a random sample of 300 comments, examining whether they addressed biospecimen … Read more

The Empty Performative?

December 20, 2016

This chapter explores some of the linguistic aspects of informed consent to genetic biobanking, defined as the collection and storage of DNA samples and derived information for present and future research purposes. Drawing on the linguistic literature, the chapter examines informed consent from the perspective of speech act theory. Qualitative analysis of interviews with people … Read more

Looking for Trouble

December 20, 2016

Advances in genomics have led to calls for developing population-based preventive genomic sequencing (PGS) programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the … Read more

Genomic Research With the Newly Dead

December 20, 2016

Recent advances in next generation sequencing along with high hopes for genomic medicine have inspired interest in genomic research with the newly dead. However, applicable law does not adequately determine ethical or policy responses to such research. In this paper we propose that such research stands at a crossroads between other more established biomedical clinical … Read more