The consent problem within DNA biobanks
Abstract
Large prospective biobanks are being established containing DNA, lifestyle and health information in order to study the relationship between diseases, genes and environment. Informed consent is a central component of research ethics protection. Disclosure of information about the research is an essential element of seeking informed consent. Within biobanks, it is not possible at recruitment to describe in detail the information that will subsequently be collected because people will not know which disease they will develop. It will also be difficult to describe the specific research that will be performed using the biobank, other than to stipulate categories of research or diseases that are not included. Potential subjects can only be given information about the sorts of research that will be performed and by whom. Organisations responsible for biobanks usually argue that this disclosure of information is adequate when seeking informed consent, especially if coupled with a right to withdraw, as it would not be feasible or it would be too expensive to seek consent renewal on a regular basis. However, there are concerns about this ‘blanket consent’ approach’. Consent waivers have also been proposed in which research subjects entrust their consent with an independent third party to decide whether subsequent research using the biobank is consistent with the original consent provided by the subjectDOI
10.1016/j.shpsc.2006.06.007
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Citations of this work
In Defense of Broad Consent.Gert Helgesson - 2012 - Cambridge Quarterly of Healthcare Ethics 21 (1):40-50.
Biobanks--When is Re-consent Necessary?K. S. Steinsbekk & B. Solberg - 2011 - Public Health Ethics 4 (3):236-250.
A Trade Secret Model for Genomic Biobanking.John M. Conley, Robert Mitchell, R. Jean Cadigan, Arlene M. Davis, Allison W. Dobson & Ryan Q. Gladden - 2012 - Journal of Law, Medicine and Ethics 40 (3):612-629.
Breite Einwilligung (broad consent) zur Biobank-Forschung – die ethische Debatte.Gesine Richter & Alena Buyx - 2016 - Ethik in der Medizin 28 (4):311-325.
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DNA databanks and consent: A suggested policy option involving an authorization model. [REVIEW]Timothy Caulfield, Ross Upshur & Abdallah Daar - 2003 - BMC Medical Ethics 4 (1):1-4.
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