Demystifying Biobanks

摘要

In the conclusion of his recent essay, "Respecting Donors to Biobank Research," Tom Tomlinson outlines several policies and practices for research biobanks to respect the "right to informed donation." One would be hard-pressed to disagree with the merits of these suggestions, yet much of the rest of his essay illustrates a lack of appreciation of the actual nature and policies of biobanks. In particular, while Tomlinson speaks generally of "research biobanks," there is a critical failure to distinguish between the varying array of biobanks that constitute the current biomedical and scientific landscape.For example, there are population biobanks, which are epidemiological and longitudinal in nature. In this category, individuals are often asked to give broad consent to future unspecified research studies. The term "unspecified" here is not synonymous with "uncontrolled." Indeed, broad consent is provided with the understanding that such unspecified future research will be subject to the very strict ongoing governance mechanisms and ethics oversight of the biobank. Samples and data are coded, rather than anonymized, and individuals therefore hold a right to withdraw; in turn, biobanks can thus establish re-contact mechanisms that serve constantly to remind participants of their inclusion and to provide updates on general research results. This practice does not constitute "blanket" consent, the term Tomlinson employs throughout his essay. In fact, many ethicists, lawyers, researchers, and other experts would agree that blanket consent would be unethical and probably illegal, including under consumer-protection legislation.