News Release

People are unlikely to withdraw consent for genetic research

Informed consent for genetic research on blood stored for more than a decade: a population based study BMJ Volume 325, pp 634-635

Peer-Reviewed Publication

BMJ

People are unlikely to withdraw consent for genetic research even when samples were taken many years ago, research in this week's BMJ suggests.

In 1990 1583 randomly selected people in Sweden donated blood to a World Health Organisation project researching cardiovascular disorders and diabetes. Eleven years later, doctors sought their consent for genetic research, which was not possible when the samples were taken.

The remaining participants were asked whether their blood could be used for academic or commercial genetic research, provided that an ethics committee gave approval and samples were anonymised.

93% of the eligible participants gave their consent for both academic and commercial research. 2.2% refused and 4.8% did not reply or gave incomplete answers. Of those who gave consent 22.3% wanted to be informed about, and give consent for, each new genetic project. The rest gave general consent to genetic research as long as it was approved by an ethics committee. 2.5% of the participants did not give consent for their blood to be used for commercial research.

The authors conclude that people's readiness to contribute to genetic research is generally high. The results also demonstrate that it is feasible to obtain individual consent many years after blood was donated, and that consent is given nearly as often for commercial research as academic research.

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