Research Ethics Roundup: A fiscal year review of 2013, proposed revisions to the Common Rule, and more

By Meryn Robinson, Educational Programs and Membership Services

While we’re already three weeks into the New Year, I hope that you’ll consider adding one more resolution to your list: keeping up with Research Ethics Roundup! This year, and always, we commit to sharing timely and relevant stories related to research ethics and oversight with our loyal readers. As you read along, please don’t hesitate to comment on the pieces that interest you. We would love to hear your thoughts!

Can Data Be Evil?: Using the knowledge about hypothermia gained from Nazi experiments as an example, author Chuck Klosterman considers the question of whether data itself can be evil if the method by which it was obtained was immoral. He contends that, while the immorality of how data is acquired should be acknowledged and understood, data itself is neutral and should not be off-limits if it offers benefit.

Drug Companies Accused of Holding Back Complete Information on Clinical Trials: Following the publication of a committee report that examined the United Kingdom’s Department of Health’s decision to spend £424m on stockpiling the drug Tamiflu, members of parliament (MPs) found that experts failed to agree on how well the drug actually worked. MPs were unable to fully explore the issue, however, because key research results were not made publicly accessible. MPs expressed “extreme concern” that drug manufacturers are only publishing about half of completed drug trial results.

Ease Up on Social Science: Prompted by the Department of Health and Human Services July 2011 Advance Notice of Proposed Rulemaking (ANPRM), a new consensus report from the National Research Council urges “officials to be more exacting in determining which types of social and behavioral science research should receive oversight.” The report, titled Proposed Revisions to the Common Rule for the Protection of Human Subjects in the Behavioral and Social Sciences, also provides guidance to “IRBs on techniques to address [issues raised in the ANPRM], with specific examples and best practice models to illustrate how the techniques would be applied to different behavioral and social sciences research procedures.”

How UW-Madison Lab Cats Became the Symbols for PETA’s Campaign Against Animal Research: After obtaining photographs of cats used in a research laboratory at the University of Wisconsin—Madison, People for the Ethical Treatment of Animals (PETA) launched a campaign against the institution, purchasing ad space on local buses to disseminate the photographs and filing a lawsuit and several complaints, including two to the United States Department of Agriculture and one to the National Institutes of Health. As a result of PETA’s efforts, the research in question was temporarily suspended while investigations were conducted.

I Had My DNA Picture Taken, With Varying Results: Author Kira Peikoff ordered genetic tests from three different direct-to-consumer companies in order to understand her risk for certain diseases. She found that her results were inconsistent and varied between each company. In this piece for The New York Times, Peikoff explores the meaning of these discrepancies and considers the factors that may explain her inconsistent results, including how many DNA segments and which DNA segments were used to calculate risk, the lack of understanding over what causes many diseases, and the exclusion of risk factors beyond genetics.