Obtaining informed consent (IC) for genetic/genomic research is complicated because most of the ethical issues associated with genetic research are considerations to be disclosed by researchers and weighed by prospective participants during the consent process. These include complicated questions associated with return of results, management of incidental findings (results beyond the aims of the study that are of potential significance to individual participants), and responsibility for reinterpretation of findings.
Sickle cell disease (SCD), characterized by severe pain crisis and progressive organ damage as well as early death, is one of the most common inherited blood disorders in the world. However, since 90% of U.S. patients self-identify as Black and experience neglect as a result of structural racism, until recently, the condition has received very little research funding and minimal attention from the medical research community. Recent advances in human genetics have reinvigorated interest in the genetic underpinnings of SCD and the potential to “cure” it with novel genetic therapies.
An open-access repository of FAQs that accompany genomic research in social and behavioral genomics. This resource was developed in collaboration with researchers at the Stanford University Center for Biomedical Ethics (Dr. Daphne O. Martschenko); Columbia University and The Hastings Center (Dr. Lucas J. Matthews); the Stanford University Graduate School of Education (Dr. Ben W. Domingue); and Princeton University, Department of Sociology (Dr. Sam Trejo).