Bioethics researchers Paul Helft of the Fairbanks Center for Medical Ethics, and Eric Meslin of the Indiana University Center for Bioethics publish paper on patient attitudes towards biobanks - Biomedical research, social science and ethics scholars have been working for over a decade to understand attitudes toward biobanking; "Cancer Patients' Attitudes Toward Future Research Uses of Stored Human Biological Materials" continues the progress of this research. In response to a request for a comment for this blog, Helft noted that a better understanding of attitudes toward biobanking will help to establish: "Policy and best practices for informed consent for future, unspecified research". This newly published research, conducted by Helft, Meslin, and others, provides valuable information to anyone interested in recruiting research participants for, or in shaping the development of, human biobanks. "Our study", Helft remarked, "was one of the few which have assessed the attitudes of patients who actually gave tissue to a biobank under these conditions". The authors found that a significant minority placed restraints on or had reservations about unrestricted future research on their stored tissue. "In developing policy and best practices", said Helft, "we need to understand this group’s attitudes better". - J.O.
Helft PR, Champion VL, Eckles R, Johnson CS, Meslin EM. Cancer Patients' Attitudes Toward Future Research Uses of Stored Human Biological Materials. JERHRE. 2007; Sept;2(3):15-22.
Abstract: THE POLICY DEBATE CONCERNING INFORMED consent for future, unspecified research of stored human biological materials (HBM) would benefit from an understanding of the attitudes of individuals who contribute tissue specimens to HBM repositories. Cancer patients who contributed leftover tissue to the Indiana University Cancer Center Tissue Bank under such conditions were recruited for a mail survey study of their attitudes. Our findings suggest that a clear majority of subjects would permit unlimited future research on stored HBMs without re-contact and reconsent, and a significant minority appear to desire ongoing control over future research uses of their tissue. These differences merit further investigation and suggest that a policy of blanket consent for all future, unspecified research would be premature.
[Note: PredictER Blog will announce more research from on attitudes toward predictive health research in the near future.]