A university has agreed to pay 41 members of a Native American tribe $700,000 after using DNA for purposes it was not donated for. As well as ending a dispute between the Havasupai people and geneticists at Arizona State University in Tempe, the settlement highlights a dilemma facing much modern genetics research.
快猫短视频s who work with human subjects must obtain informed consent, making sure the participants understand and agree to the purposes of the research and the risks it might entail. This process does not always sit well with the demands of genetics research.
Direct physical harm is unlikely but the potential for privacy violation is great. DNA can also turn out to reveal so much about disease risk, ancestry and other aspects of biology that researchers often find themselves itching to use people鈥檚 DNA to answer questions that could not have been predicted at the outset.
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Such curiosity is what got Arizona State University into trouble with the Havasupai. The disputed DNA was collected in the early 1990s to shed light on the high rates of diabetes among the Havasupai, but researchers went on to use it to probe their ancestry, which angered tribe members.
Tough to track
Since then, 鈥渢hings have really progressed鈥�, says , director of the Centre of Genomics and Policy at McGill University in Montreal, Canada.
Nowadays, if researchers want to use samples to study a condition not initially specified, they must get permission from the participants 鈥� something that did not happen with the Havasupai鈥檚 DNA. Another option is to obtain a waiver that usually requires all the data to be anonymised.
This approach is not ideal for either researchers or volunteers. Participants can be difficult to track down, and once the link between DNA data and the donor has been broken it becomes impossible to collect extra information, such as a disease鈥檚 progression.
at the Institute for Genetic Medicine in Bolzano, Italy, says that researchers could also do much more to keep study participants abreast of how their DNA is being used, perhaps by making better use of social networking tools.
Open consent
The (PGP), an effort to sequence the complete genomes of 100,000 volunteers, takes a radically different approach: it requires participants to consent to their DNA being used for just about anything 鈥� and posted online along with their medical history, allowing anyone to use it.
PGP鈥檚 bioethicist, , says this 鈥渙pen consent鈥� approach is the only honest way to collect DNA. 鈥淲e need to tell people that there is an uncertain future.鈥�
Others are more cautious. 鈥淚t鈥檚 an intriguing model, but I think it鈥檚 totally un-generalisable,鈥� says at Vanderbilt University in Nashville, Tennessee. Researchers ought to focus on improving ways of protecting genetic data, not removing them, she says. 鈥淲ithout the trust of the public this isn鈥檛 going to work.鈥�
, a biotechnology lawyer who advises PGP, agrees its approach isn鈥檛 for everyone. He suggests that some researchers asking for open consent could limit who can access participants鈥� DNA, decreasing the chances of misuse. 鈥淚 don鈥檛 think it鈥檚 the case that we need to abandon all attempts at privacy,鈥� he says.
