The HHS has issued a Notice of Proposed Rule Making (NPRM) with significant changes to the U.S. regulation of human subjects research. Bill of Health hosted a symposium on the topic, getting some of the most important thinkers about human subjects research to weigh in on the NPRM and what it means for the field.
Henrietta Lacks and the Great Healthdata Giveaway
Consent, Causality, and Castles in the Air
“I prefer to be asked”
So many left behind…
“We are holding health care for ransom, just get naked already!” or “Consent neutrality is non-neutral in effect”
Privacy and Promises, Promises, Promises
Your Privacy or Your Life – Human Research Subjects and the Great Healthdata Giveaway
The Common Rule NPRM Blog Series: Posting of Consent Forms
Some Commentary on How to Think About Secondary Research with Biospecimens
How Should We Think About Whether To Donate Our Leftover, Non-Identified Tissue to Research?
When will regs be revised again? & Marcia Angell in NYRB
Blog Series on NPRM at PRIM&R’s “Ampersand”
The Common Rule NPRM: Single IRB Review
Vulnerability, Coercion, and Undue Influence: From the Mud into the Muck?
The Common Rule NPRM: Biospecimens
More Resources, Now from OHRP
Resources from PRIM&R
Helpful Resources to Understand What the NPRM Proposes to Change
Escape for Many, Scant Relief for Those Left Behind
Freedom for Historians, If They Can Keep It