by László M. Szabó, Esq., director of the Office of Research Regulatory Affairs at Rutgers, The State University of New Jersey
More than six months after the 2013 Advancing Ethical Research (AER) Conference, members of the PRIM&R Blog Squad are still benefiting from the experiences they had in Boston. With the opening of registration for the 2014 AER Conference around the corner, we’re pleased to share a few of their reflections.
In November of last year, I attended a panel at the 2013 AER Conference titled, Innovations in Genomics and Biobanking, and more than six months later I still find myself thinking about it. During the session, the panelists discussed how research involving the use of biospecimens is on the rise, but best practices around the collection, storage, and identification of the samples and their donors remain lacking. Considering that such research has long been a foundation of medical advancement, but has also given rise to important lessons about the protection of research subjects (take for example the case of Henrietta Lacks), this fact is worrisome.
Biomedical research tends to promote the creation of biospecimen repositories for intra- or inter-institutional use. The process for creating such repositories is relatively clear cut; the planned purpose is conveyed to the subjects in a consent document, which outlines the use of their specimens. Then, following the consent process, samples are collected and stored with appropriate protections and used for the research purposes described to subjects.
In reality, however, biospecimen research does not always occur on such a straightforward trajectory.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.