This week’s Research Ethics Roundup examines new findings on who benefits from genome-wide association studies, India’s new informed consent provisions, the European Union’s new clinical study report policy, and British researchers’ arguments for non-human primate research.
Genomics Is Failing On Diversity: In this Nature commentary, Alice B. Popejoy and Stephanie M. Fullerton discuss their findings that genome-wide association studies (GWAS) continue to primarily benefit those of European ancestry. Although GWAS are increasingly being conducted in Asia, people of Latin American and African ancestry are still frequently excluded from such research. The authors point out that although the National Institutes of Health (NIH) mandates diversity in the research it funds, NIH’s currently funded GWAS do not reflect “the world’s genetic variation.”
New Ethics Guidelines for Clinical Trials Involving Humans: In this Deccan Herald article, reporter Kalyan Ray highlights the Indian Council of Medical Research’s renewal of its clinical trial guidelines. The current draft includes new sections on social and behavioral research and genetics. There are also new informed consent provisions, including a provision that requires a layperson to sit on the ethics committee and review informed consent documents.
Europe’s Drug Regulator Opens Vaults of Clinical Trials Data: Alison Abbott of Nature reports that the European Medicines Agency has recently begun the practice of publishing clinical study reports (CSRs), which are more comprehensive than the papers that drug companies typically submit to journals. CSRs frequently contain more information on a drug’s adverse effects and negative results than published journal articles. Patient organizations such as EURORDIS-Rare Diseases Europe applauded the decision.
Is Testing on Primates Still Needed?: In this BBC article, reporter Tom Feilden writes about the debate surrounding non-human primate research in the United Kingdom. Opponents argue that new technological advances such as neural imaging mean that non-human primate research is quickly becoming outdated. However, researchers at Newcastle University and Oxford argue their work is conducted in a humane manner and continues to help people who have been paralyzed.