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EDITORIALS: Graeme Laurie Evidence of support for biobanking practices BMJ 2008; 337: a337 [Full text]

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Opt-out from biobanks better respects patients' autonomy and trust

Linus Johnsson, Mats Hansson, Stefan Eriksson, and Gert Helgesson.   (1 September 2008)

Opt-out from biobanks better respects patients' autonomy and trust 1 September 2008
Linus Johnsson, MD, PhD student Centre for Research Ethics and Bioethics, Uppsala University, Uppsala Science Park SE-751 85 Uppsala, Mats Hansson, Stefan Eriksson, and Gert Helgesson. Send response to journal: Re: Opt-out from biobanks better respects patients' autonomy and trust	In a recently published study on Swedish healthcare-associated biobanks we found that dissent to storage and use of samples is rare and does not pose a threat to research.1 We also concluded that the results give prima facie reason to consider a move to an opt-out system. The latter has been challenged by Graeme Laurie, who advises caution and close scrutiny before practices are changed.2 We will consider some of Laurie's arguments. First, Laurie presents two controversies as evidence that opt-out systems are inappropriate. They do not convince. In spite of the controversy surrounding the Icelandic health sector database, public support continues.2 3 Furthermore, negative attitudes may at least in part arise from the presence of commercial interests,3 4 which are largely absent in the Swedish context. The second example concerns organ donation in England, which should not be confused with biobank research. Second, we concluded in our paper that distrust is not widespread. Laurie, taking one step further, finds in it "evidence of high levels of trust", which explains why he also thinks that "the current system works to promote respect for research and patients." However, many people who do not distrust may not quite trust, either--the issue may simply not be important enough to warrant attention. To the extent that Swedes do trust, we cannot assume that the system is the reason; far from promoting respect, it might not have any impact on people's views at all. Third, though opt-in systems may be costly, Laurie claims that an opt -out system could prove more so, because one would have to give patients "adequate information about who might have access to their samples or information, and for what purposes." We have argued elsewhere that broad descriptions of purpose are quite sufficient;5 several surveys on attitudes of donors support this position.6 Furthermore, as argued by Darren Shickle, donors have no positive right implying that biobanks must be run the way they would prefer; "the choice for the individual is to participate on the terms offered or not."7 Fourth, public education in medical research may or may not engage people; an attempt is all that can and should be made, if autonomy is truly to be respected. Thinking the matter unimportant is not necessarily irrational; the "poorly informed apathy" Laurie suspects among Swedish patients may in fact be rational agnosticism. Forcing information on someone may not only change her beliefs, but also attitudes she wants unchanged. Insisting that she make a choice is even more clearly disrespectful. Provided that people are generally informed, have means of obtaining more information and are free to act, an opt-out system could be a better way to respect their autonomy, by virtue of being less intrusive. There is no neutral way to inform the public about biobank research: we must frame it as either normal, in which case consent should be assumed as the default position, or extraordinary, requiring explicit consent. Either way, today's policies will affect tomorrow's attitudes. 1. Johnsson L, Hansson MG, Eriksson S, Helgesson G. Patients' refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study. BMJ 2008;337:a345. 2. Laurie G. Evidence of support for biobanking practices. BMJ 2008;337:a337. 3. Korts K, Weldon S, Lilja Gudmundsdóttir M. Genetic databases and public attitudes: A comparison of Iceland, Estonia and the UK. Trames 2004;8(1/2):131-149. 4. Kaye J, Martin P. Safeguards for research using large scale DNA collections. BMJ 2000;321(7269):1146-9. 5. Hansson MG, Dillner J, Bartram CR, Carlson JA, Helgesson G. Should donors be allowed to give broad consent to future biobank research? Lancet Oncol 2006;7(3):266-9. 6. Wendler D. One-time general consent for research on biological samples. Bmj 2006;332(7540):544-7. 7. Shickle D. The consent problem within DNA biobanks. Stud Hist Philos Biol Biomed Sci 2006;37(3):503-19. Competing interests: None declared