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An opt out system for tissue storage: lessons from Denmark
- Klaus Hoeyer (7 October 2008)
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Klaus Hoeyer, Associate Professor Institue for Public Health, University of Copenhagen, Øster Farimagsgade 5, DK-1014 Copenhagen
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Dear Editor, In an engaging debate Johnsson et al and Laurie discuss the implications of a Swedish study indicating that only 1 person out of 690 dissents from tissue storage.1-3 Johnsson et al suggest that an opt out system would be more appropriate than demanding consent, while Laurie argues that high consent rates might just indicate misplaced trust and that providing adequate information to the population in an opt out system would be expensive and difficult. Neither of the two parties mentions that the opt-out system for routine tissue storage suggested by Johnsson et al is already in place in Denmark. It has created a strange system of double standards: no consent is needed for using a tissue sample for research if it is taken for diagnostic purposes and used for research only at a later stage; while samples taken specifically for research must be collected with consent. During the past four years, a total of 191 persons (as of September 18, 2008) out of a population out of 5.4 million have registered themselves as dissenting from tissue storage and/or use. This very low figure supports the claim by Laurie that the general population is not aware of the system. Laurie’s concern is that the biobank activities might not be worthy of the trust that people place in them and his solution is to provide more information. Johnsson et al replies that it is enough to be generally informed. However, the question is if information levels are all that central to the issue. Numerous qualitative studies have shown that people only to a very limited extent use the information they are provided with to decide upon tissue storage. 4-8 So if more information is not going to help them, how will Laurie’s worries about the trustworthiness be addressed? In other words: who will look after donor interests while the rest of us discuss consent practices and information levels? Klaus Hoeyer, Associate Professor
Reference List (1) Johnsson L, Hansson MG, Eriksson S, Helgesson G. Patient\'s refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study. BMJ 2008; 337. (2) Laurie G. Consent for biobanking: Lack of dissent when opting in doesn\'t necessarily support \"opt out\". BMJ 2008; 337:186-187. (3) Johnsson L, Hansson MG, Eriksson S, Helgesson G. Opt-out from biobanks better respects patient\'s autonomy. BMJ 2008; 337. (4) Barr M. \'I\'m not Really Read up on Genetics\': Biobanks and the Social Centext of Informed Consent. BioSocieties 2006; 1:251-262. (5) Busby H. Consent, trust and ethics: reflections on the findings of an interview based study with people donating blood for genetic research for research within NHS. Clinical Ethics 2006; 1:211-215. (6) Ducournau P. The viewpoint of DNA donors on the consent procedure. New Genetics and Society 2007; 26(1):105-116. (7) Hoeyer K. \"Science is Really Needed - That\'s All I Know\". Informed Consent and the Non-Verbal Practices of Collecting Blood for Genetic Research in Sweden. New Genetics and Society 2003; 22(3):229-244. (8) Skolbekken J-A, Ursin LØ, Solberg B, Christensen E, Ytterhus B. Not Worth the Paper it\'s Written on? Informed Consent and Biobank Research in a Norwegian Context. Critical Public health 2005; 15(4):335- 347. Competing interests: None declared |
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