In this week’s Research Ethics Roundup, we explore some of the ethical and practical questions posed by new innovations in the research enterprise, as well as some age old concerns, such as the recruitment of subjects for clinical trials. Read on:
FDA, Sponsors Look to Expand Patient Input to Clinical Trials: The involvement of patient groups in the design of clinical trials is becoming increasingly common. In this article for Applied Clinical Trials, Jill Wechsler reports on this shift, as well as the Food and Drug Administration’s efforts to foster patient-focused drug development.
Hopkins Faces $1B Lawsuit Over Role in Government Study that Gave Subjects STDs: From 1946 to 1948, the US Public Health Service supported research in Guatemala in which subjects were intentionally exposed and infected with sexually transmitted diseases without consent. On April 1, former research subjects and their families filed a lawsuit against The Johns Hopkins University, which alleges that the institution is in part responsible given the role that some faculty members at the institution had in approving the study.
Living With Cancer: Clinical Trials Looking for Patients: In this column for The New York Times, Susan Gubar examines clinical trial enrollment through her own experiences participating in a Phase I trial for ovarian cancer, including how the design of trials make participation difficult for many.
This New Facebook App Wants to Collect Your DNA for Research: Genes for Good, a new Facebook app from the University of Michigan, will allow individuals to “complete recurring surveys about their health history and habits. Once they’ve filled out enough questionnaires, they’re eligible to send in a saliva sample; researchers will then extract their DNA and analyze it.” In this article for Mic, Sophie Kleeman explores some of concerns related to privacy that the app raises.
We Need to Unlock the Brain’s Secrets—Ethically: On March 26, The Presidential Commission for the Study of Bioethical Issues released Gray Matters: Topics at the Intersection of Neuroscience, Ethics, and Society, which examines questions around advances in neuroscience and related technologies. In this piece from Scientific American, Amy Gutmann, chair of the committee, discusses the release of the report, as well as the three central issues explored: the capacity for consent; neuroscience and the legal system; and neural modification and cognitive enhancement.