Banking Without Checks?
Mary R. Anderlik
Associate Professor, University of Louisville School of Medicine
Advances in biology and information science have fueled the creation of companies combining “biotech, bioinformatics and dotcom.”1 These companies are the commercial biobanks. Here “biobank” refers to an entity engaged in the solicitation, collection, and storage of human biological materials for purposes that include dissemination for research. Human tissue may be banked for many purposes, including assisted reproduction, transplantation, and development of tissue-based products. The focus in this paper will be on the narrower, although still quite diverse, world of those for whom tissue is a means to information, rather than an end in itself. The existence of these entities poses a distinctive, if not unique, set of ethical and policy questions.
The first section of the paper is an overview of the reasons for the emergence of biobanks, chiefly, a shift in the paradigm for much genetic research. Any problems associated with biobanking must be considered within a context that comprehends the many possible benefits of utilizing large-scale collections of tissue and information to support progress in biomedicine. Yet a recognition of the benefits does not dispose of the questions. Areas of concern include consent, compensation, accountability, and confidentiality. The underlying theme is trust, or lack of trust, in those carrying out research. A number of bioethicists have put forward the idea of a “tissue trustee” as a solution to the problem of distrust. A number of commercial biobanks describe their operations in precisely these terms. A major question, then, is whether these entities are trustworthy.
Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. © 2003 Koninklijke Brill NV Printed in the Netherlands.