Research Ethics Roundup: Crowdfunded Research Raises Ethical Questions, Survey of Patients’ and Physicians’ Opinions of Clinical Trials, and More

This week’s Research Ethics Roundup covers two new research ethics concerns—the implications of crowdfunding research and conducting research on tattoos—as well as updates on the USDA’s animal research statistics and the federally funded Genomic Data Commons.

San Diego Parkinson’s Research Sparks Ethical Discussions : In this article published by KPBS in San Diego, Maureen Cavanaugh and Michael Lipkin highlight a crowdfunding program that has raised $2 million for clinical research at the Scripps Research Institute. Bioethicist Mary Deveraux said the approach may favor research supported by wealthy, well-educated stakeholders and patients with more common diseases.

The FBI’s Studying Prisoner Tattoos—And Pissing Off Privacy Hawks: In this article from WIRED, Brian Barrett outlines a report produced by the Electronic Frontier Foundation (EFF), which argues that a study produced by the National Institute ofPrivacy Standards and Technology (NIST) and the FBI failed to uphold research ethics standards. NIST’s Tattoo Recognition Technology Study used images of prisoners’ tattoos, which, according to the EFF, contained personally identifiable information. An IRB did not review the study because NIST had determined that the study did “not meet the criteria for human subjects research as defined by federal regulations,” but the EFF report claims that such a review was necessary, given the nature of the data set collected and given that prisoners constitute a vulnerable population.

USDA14205076730_0852a342b8_q Publishes 2015 Animal Research Statistics: This Speaking of Research article reports that new US Department of Agriculture numbers show a decrease in the number of animals used in domestic research in 2014. The decrease is explained in part by American researchers sending animal research overseas and by technological advances that eliminate the need for some animal studies.

The Genomic Data Commons will Ideally Help the Cancer Moonshot and Precision Medicine Initiatives Find a Conclusive Cure to Cancer: In this article from Health IT Analytics, Sara Heath explains that a federally funded data repository, the Genomic Data Commons (GDC), has been established to support the development of the Precision Medicine Initiative and Vice President Biden’s “Cancer Moonshot.” The article reports that the GDC is projected to catalyze research development by increasing the number of researchers who can access genomic data and increasing their efficiency in finding patterns in the data.

Most Americans Would Avoid Clinical Trials Due to Worries Over Safety and Costs: In this STAT News article, Ed Silverman reports on a survey demonstrating that patients and doctors are both pessimistic about clinical studies. Only 35 percent of patients said they were “likely to participate” in a clinical research study, and 62 percent of physicians were “unsure or indifferent about the extent to which participation in a clinical trial will benefit patients.” When asked about enrolling in a cancer trial, 42 percent of patients would enroll if there were no extra out of pocket costs, and 58 percent of physicians said they would recommend patients participate in a cancer trial when “treatment is only available through a study” or when “the patient had already tried all available standard treatments.”