Tuesday, November 08, 2011

A struggle over samples in Taiwan

Taiwan is experiencing an interesting confrontation about biorepositories. In some cases, it appears that, in the past, biospecimens were obtained and stored for research purposes without gaining consent for their use. In other cases, people consented to have their samples studied for some specific use, but researchers went on to use the samples to explore something else without informing them. Both practices run afoul of a rather conservative law has newly come into force, and that requires written informed consent of all biospecimens. In order to be compliant with the law, researchers must go back and locate the persons whose specimens were collected, and 'reconsent' them in order to use their samples for specific purposes. If they do not or cannot do so, they must destroy the specimens, and here we are talking about millions of specimens. Researchers are understandably concerned about the loss of a valuable scientific resource; advocacy groups are worried about exploitation and violations of human rights, given recent scandals of unconsented use of biological samples from indigenous populations in Taiwan.

Globally, issues about consent and biorepositories are still a work in progress: should there be consent for all specimens, including blood leftover from routine clinical examinations? When there is consent, should it specify certain limited uses of the specimen for research, or leave it unspecific and open to any kind of future research? The Taiwan example shows that the ethical and policy issues are best thought carefully through before biorepositories are created, and not when the horse has already left the stable.

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