While many agree that increased data sharing is an ethical imperative given the risks that clinical trial participants are asked to undertake, the question many institutions are now struggling with is how they can meet that imperative with their current resources and while protecting the privacy of study subjects. Read more
TAG ARCHIVES FOR data sharing
By Samia Rizk, MD, professor of clinical pathology at Cairo University
Open data refers to “data that can be freely used, shared, and built-on by anyone, anywhere.” Data which is considered “open” is further required to be legally acceptable, technically readable, and available to others. The many potential benefits attributed to data sharing are combined with its many challenges: assuring privacy and security, the autonomy of participants as it relates to their ability to give valid consent, population and cultural issues, measures for appropriate governance, commercialization, and sustainability of databases.
With no binding requirement, it is a scientist’s decision whether or [...] Read more
by Anita Pascoe, MS, CIP, project coordinator at Intermountain Healthcare
Time has flown by since December’s 2014 AER Conference. The holidays came and went, and, believe it or not, spring has announced its extremely premature arrival here in Salt Lake City. Two months post-conference, I am, however, still contemplating several of the key themes discussed during the four days in Baltimore. Topping my list of memorable conference moments is John Wilbanks’ keynote address, which hit home for me on a personal as well as a professional level.
Wilbanks noted that the nature of our global research enterprise has forever been altered because of the [...] Read more
It has been a busy few weeks in the research oversight field with the release of a much anticipated Institute of Medicine report on data sharing and a new bill that seeks to overhaul drug and device development. Explore these and other stories below. HHS, Research Community Debate Informed Consent Policy: This piece from Kaiser Health News explores some of the various viewpoints surrounding the changes proposed by the Office for Human Research Protections in their “Draft Guidance on Disclosing Reasonably Foreseeable Risks in Research Evaluating Standards of Care." Read more
From new approaches to genetic research to changing conceptions of privacy, this week’s Research Ethics Roundup explores how advances in technology are changing the course of research.
Most Americans Would Share Health Data for Research: A recent NPR-Truven Health Analytics Health Poll saw a decline in the percentage of Americans willing to share their health information anonymously for research purposes. Fifty-three percent of respondents indicated that they were comfortable sharing anonymized health information, a 15 percent decline [...] Read more