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Ethics of Treatment Interruption Trials in HIV Cure Research

November 10, 2017
Though antiretroviral therapy is the standard of care for people living with HIV, its treatment limitations, burdens, stigma and costs lead to continued interest in HIV cure research. Early-phase cure trials, particularly those that include analytic treatment interruption (ATI), involve uncertain and potentially high risk, with minimal chance of clinical...

Online Education and E-Consent for GeneScreen, a Preventive Genomic Screening Study

November 1, 2017
BACKGROUND: Online study recruitment is increasingly popular, but we know little about the decision making that goes into joining studies in this manner. In GeneScreen, a genomic screening study that utilized online education and consent, we investigated participants’ perceived ease when deciding to join and their understanding of key study...

Modernizing Research Regulations Is Not Enough

July 1, 2017
We are a multidisciplinary collaborative made up of bioethicists, social scientists, clinicians, and lawyers whose work focuses on the ethical challenges posed by a networked approach to biorepositories. Like many, we have been concerned that our human research regulations had become woefully out of date. While the interventional, hypothesis-driven research...

Membership Recruitment and Training in Health Care Ethics Committees: Results from a National Pilot Survey

June 30, 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 makeup of membership. Thus, our study fills an important knowledge gap in...

“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...

Is There Evidence That We Should Screen the General Population for Lynch Syndrome With Genetic Testing?

March 6, 2017
Background: The emerging dual imperatives of personalized medicine and technologic advances make population screening for preventable conditions resulting from genetic alterations a realistic possibility. Lynch syndrome is a potential screening target due to its prevalence, penetrance, and the availability of well-established, preventive interventions. However, while population screening may lower incidence...

Automatic Placement of Genomic Research Results in Medical Records: Do Researchers Have a Duty? Should Participants Have a Choice?

December 15, 2015