Biobanks store and systematically organize biological tissue samples and related information for use in medical research. Recent advances in information technology have made biobanks more accessible to researchers than ever. While this new accessibility opens up new and potentially fruitful research methods, it has also given rise to many important ethical and policy issues for the future governance of biobanks.
These issues usually fall within the following categories:
The issue of informed consent for the use and re-use of donor tissue for medical research is one of the most important ethical issues in biobank governance.
Maintaining privacy and anonymity for tissue donors for is a significant consideration related to ethics in medical research.
Ethical questions related to the question of who owns donor tissue is explored.
The questions of public involvement in the governance of biobanks for is explored in these resources.
For each of these categories, this information guide provides scholarly works that attempt to answer the ethical questions that these issues give rise to as well as a general overview of the ethical landscape of contemporary biobanking. Research assistance provided by James Baker, Jamshed Daruwala and Paul Muriello.
Klaus Hoeyer presents a critical review of the framing of tissue storage as an ethical issue and solutions proposed as well as an overview of the empirical studies of donor attitudes and interests.
Hoeyer, Klaus. “The ethics of research biobanking: a critical review of the literature.” Biotechnology and Genetic Engineering Reviews 25.1 (2008): 429-452.
The European Union’s European Commission convened an expert group to deal with the ethical and regulatory challenges of international biobank research. Its report, published in 2012, explores the science, activities, public perceptions, regulation and challenges for the governance of biobanks.
Gottweis, Herbert. “Biobanks for Europe: A challenge for governance. Report of the Expert Group on Dealing with Ethical and Regulatory Challenges of International Biobank Research.” European Commission, 2012.
The Bioethics and Subject Advocacy Program of the Indiana CTSI provides consultations to help clarify and address ethical issues that arise when conducting translational research.