Research with Biospecimens: Balancing Individual Interests and Social Goods
This panel at the annual meeting of the American Society for Bioethics and Humanities examined issues addressed at Petrie-Flom's 2015 conference "Specimen Science: Ethics and Policy Implications," and the edited volume that arose from the conference which was published in 2017.
How should individual interests related to privacy and autonomy intersect with public interests in the use of biological specimens for secondary research purposes? Should individuals have the opportunity to provide their consent to such use, and if so, how? Is mere notice sufficient, or should permission be assumed or deemed unnecessary? How do these questions differ if we are talking about identifiable biospecimens versus those that have been deidentified - and is deidentification even possible? Each of these questions has been brought to the attention of the lay public through Rebecca Skloot's popular book, The Immortal Life of Henrietta Lacks, and they are of utmost importance to the future of scientific and medical advancements dependent on biospecimen research. But they are hotly contested, as evidenced by the overwhelming number of public comments submitted in response to the proposed regulatory changes governing secondary use of biospecimens. Those regulatory changes have now been finalized, largely leaving the status quo in tact - but offering new options for broad, rather than specific, consent to biospecimen research, and leaving important questions unanswered as to what will count as deidentified, if anything. Did the regulators strike the right balance between individual interests and the public good?This panel session will address ethical and regulatory issues raised by research with biospecimens, highlighting key themes from a forthcoming edited volume (MIT Press, Fall 2017). Panelists addressed the importance of biospecimen research, what we know about public perspectives regarding consent and disclosure, and relevant regulatory changes.
Barbara Bierer, Faculty Co-Director of the MRCT Center of Brigham and Women's Hospital and Harvard; Co-Chair, MRCT Executive Committee; Professor of Medicine, Harvard Medical School
I. Glenn Cohen, Professor of Law and Faculty Director, the Petrie-Flom Center, Harvard Law School
Holly Fernandez Lynch, Assistant Professor, Department of Ethics and Medical Policy, Perelman School of Medicine, University of Pennsylvania
Suzanne Rivera, Vice President for Research and Assistant Professor of Bioethics, Case Western Reserve University