Research Ethics Roundup: Criticism of the NPRM for Revisions to the Common Rule, Concerns over the Failure to Report to ClinicalTrials.gov, and More

This week’s Research Ethics Roundup highlights how the “moonshot” initiative could lead to changes in clinical trial participation and how studying dogs’ DNA profiles may lead to advances in psychiatric research for humans.

DogsDog DNA Probed for Clues to Human Psychiatric Ills: In this piece for Nature, Heidi Ledford reports on the new effort to enroll pet dogs into a project called Darwin’s Dogs that “aims to compare information about the behaviour of thousands of dogs against the animals’ DNA profiles.” Dogs suffer from similar psychiatric conditions as humans and researchers think they may be good models to learn more about human disorders.

Living With Cancer: A Broken Covenant With Patients: In this piece for The New York Times, Susan Gubar discusses her reaction as a cancer patient to new reports of non compliance with a federal law that requires certain data be reported on ClinicalTrials.gov. She notes “To date, I have had approximately 20 CT scans for the trial—not one of which was good for me physically or psychologically, but all of which help researchers ascertain how the drug I take works. Yet the knowledge they gain from this study remains barren, if it does not circulate among other researchers, cancer doctors, and patients.”

‘Moonshot’ Could Improve Trial Enrollment, Data Sharing: Jeannie Baumann of Bloomberg BNA discusses how Vice President Joe Biden’s “moonshot” initiative to “cure cancer could catalyze changes that improve data sharing among scientists and increase clinical trial participation.” Vice President Biden has cited his concern that only a small number of American cancer patients are enrolled in a clinical trial.

Henrietta LacksImmortal Tension: Henrietta Lacks, And The Rift Between The New Common Rule And The Common Good: Author Paul C. McLean reports on the connection between the Henrietta Lacks story and the sweeping changes in the Department of Health and Human Services’ 2015 Notice of Proposed Rulemaking (NPRM) for revisions to the Common Rule. In this article from WBUR, McLean shares researchers’ concerns that the NRPM’s broad consent provisions for biospecimens research may negatively affect research generated from institutions that work with under-served populations.