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Target Article

“I didn’t have anything to decide, I wanted to help my kids”—An interview-based study of consent procedures for sampling human biological material for genetic research in rural Pakistan
Nana Cecilie Halmsted Kongsholm, Jesper Lassen & Peter Sandøe

Background: Individual, comprehensive, and written informed consent is broadly considered an ethical obligation in research involving the sampling of human material. In developing countries, however, local conditions, such as widespread illiteracy, low levels of education, and hierarchical social structures, complicate compliance with these standards. As a result, researchers may modify the conse...

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Parents’ attitudes toward consent and data sharing in biobanks: A multisite experimental survey
Armand H. Matheny Antommaria, Kyle B. Brothers, John A. Myers, Yana B. Feygin, Sharon A. Aufox, Murray H. Brilliant, Pat Conway, Stephanie M. Fullerton, Nanibaa’ A. Garrison, Carol R. Horowitz, Gail P. Jarvik, Rongling Li, Evette J. Ludman, Catherine A. McCarty, Jennifer B. McCormick, Nathaniel D. Mercaldo, Melanie F. Myers, Saskia C. Sanderson, Martha J. Shrubsole, Jonathan S. Schildcrout, Janet L. Williams, Maureen E. Smith, Ellen Wright Clayton & Ingrid A. Holm

Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental ...

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Data and tissue research without patient consent: A qualitative study of the views of research ethics committees in New Zealand
Angela Ballantyne & Andrew Moore

Purpose: Secondary use of clinical tissue and data is an increasingly important platform for health research. Many jurisdictions allow research ethics committees (RECs) or institutional review boards (IRBs) the flexibility to waive the requirement for patient consent for secondary research. But most RECs/IRBs conduct their meetings “behind closed doors” and their decision-making processes are...

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Moving beyond the theoretical: Medical students’ desire for practical, role-specific ethics training
Shana D. Stites, Justin Clapp, Stefanie Gallagher & Autumn Fiester

Background: It has been widely reported that medical trainees experience situations with profound ethical implications during their clinical rotations. To address this, most U.S. medical schools include ethics curricula in their undergraduate programs. However, the contents of these curricula vary substantially. Our pilot study aimed to discover, from the students’ perspective, how ethics pedag...

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Reliance agreements and single IRB review of multisite research: Concerns of IRB members and staff
Charles W. Lidz, Ekaterina Pivovarova, Paul Appelbaum, Deborah F. Stiles, Alexandra Murray & Robert L. Klitzman

The new National Institutes of Health (NIH) Policy on the Use of a Single Institutional Review Board (sIRB) for Multi-Site Research was adopted primarily to simplify and speed the review of complex multisite clinical trials. However, speeding review requires overcoming a number of obstacles. Perhaps the most substantial obstacle is the time and effort needed to develop reliance agreements among th...

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Taking societal cost into clinical consideration: U.S. physicians’ views
Alissa R. Stavig, Hyo Jung Tak, John D. Yoon & Farr A. Curlin

Background: Recent campaigns (e.g., the American Board of Internal Medicine Foundation’s Choosing Wisely) reflect the increasing role that physicians are expected to have in stewarding health care resources. We examine whether physicians believe they should pay attention to societal costs or refuse requests for costly interventions with little chance of patient benefit. Methods: We conducted ...

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Freezing fertility or freezing false hope? A content analysis of social egg freezing in U.S. print media
Lisa Campo-Engelstein, Rohia Aziz, Shilpa Darivemula, Jennifer Raffaele, Rajani Bhatia & Wendy M. Parker

In 2012, the American Society for Reproductive Medicine (ASRM) lifted the experimental label on oocyte preservation, but cautioned against women using it to avoid age-related infertility, known as social egg freezing (SEF). In 2014, Facebook and Apple announced that they would offer SEF as a workplace benefit. Within the context of a rapidly growing market for SEF, we were interested in how these ...

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Conflicts of interest policies for authors, peer reviewers, and editors of bioethics journals
Zubin Master, Kelly Werner, Elise Smith, David B. Resnik & Bryn Williams-Jones

Background: In biomedical research, there have been numerous scandals highlighting conflicts of interest (COIs) leading to significant bias in judgment and questionable practices. Academic institutions, journals, and funding agencies have developed and enforced policies to mitigate issues related to COI, especially surrounding financial interests. After a case of editorial COI in a prominent bioe...

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