Research Ethics Roundup: Germline Editing, Personalized Medicine, and More

From the introduction of apps designed to facilitate research to the growth of personalized medicine, this week’s Research Ethics Roundup highlights questions raised by the use of innovative technologies in research. Read on and share your thoughts in the comments.

Chimpanzees Granted Petition to Hear ‘Legal Persons’ Status in Court: On April 20, in response to a petition from the Nonhuman Rights Project (NhRP), a New York state judge granted a writ of habeas corpus to two research chimpanzees at Stony Brook University. The decision was quickly amended to remove the term ‘writ of habeas corpus,’ but at a hearing in May representatives from NhRP will have an opportunity to argue for against the detainment of the research chimpanzees.

Chinese Scientists Genetically Modify Human Embryos: A recent paper published in Protein & Cell has raised questions and reignited debate about “editing the genomes of human embryos,” or germline modification. The paper, published by two Chinese scientists, describes the researchers efforts to “modify the gene responsible for β-thalassaemia.” This article from Nature outlines some of the questions and ethical considerations raised by their work.

New Version of Cures Bill Recommends $10 Billion Boost for NIH: On April 29, a new version of the 21st Century Cures Act, which seeks “to jump-start biomedical innovation,” was released. This article from Science outlines the changes to the most recent draft, including substantial increases in proposed funding for the National Institutes of Health.

Apple Makes Ethics Board Approval Mandatory for All Medical Research Apps: The developer guidelines for apps created using ResearchKit, Apple’s new open-source software framework designed to allow researchers to conduct studies through the iPhone, have been amended. The new guidelines require that “apps conducting health-related human subject research must secure approval from an independent ethics review board.”

Personalized Medicine: Time for One-Person Trials: Earlier this year, during his State of the Union Address, US President Barack Obama announced the Precision Medicine Initiative, which seeks to understand and account for individual variability in the treatment of disease. This article from Nature considers the study designs that will be integral to this effort, including N-of-1 trials.