UNC-CHAPEL HILL/DUKE (US) — Healthy people who contribute DNA samples see their relationship with researchers as sharing a trade secret, rather than participating in traditional medical research.
Legal and medical researchers from University of North Carolina-Chapel Hill and Duke University studied interviews with participants and discovered that even though subjects had read informed consent documents which explicitly stated that their DNA contribution was not a commercial transaction, participants still perceived the exchange in that light.
It is believed that using trade secrets as a paradigm for the contribution of DNA to research will solve several current problems that are stymieing scientific advances and deterring people from taking part in research studies.
The study is published in the journal Science.
“If you listen to what DNA sample contributors, research subjects, say about their participation, they understand it more than anything else as a commercial transaction,” says John Conley, professor of law at UNC-Chapel Hill.
The policy paper is intended to start a debate about the nature of informed consent in DNA-related research, Conley says.
Traditionally, informed consent for the purposes of medical research tries to make it explicitly clear that research subjects are not entering into a commercial exchange that would in some way reward their participation.
“Why not do it differently for DNA research? DNA contributed by healthy donors is quite different from giving a liver, for example,” he says.
The people interviewed expressed a range of views about research using contributed DNA. About half had contributed DNA, while the other half had been asked to contribute but declined.
“Some said ‘just give me the money and I’m done.’ Others would have taken less money but with conditions such as being able to opt out of a future research project or being told if researchers find something that has a bearing on their personal health,” Conley says.
The best approach may be is a tiered consent, which would give people more or less control over the use of their DNA depending on their preferences.
Using trade secrets as a paradigm for the contribution of DNA to research solves several current problems, such as how to handle DNA and tissues stored in banks for research purposes.
Because getting informed consent from donors for each new research application is burdensome, a trade secret approach would give individuals the chance to give blanket consent or retain the right to opt out of future research programs.
“We are trying to fit old models onto new technologies, such as biobanking,” said paper coauthor Ryan Gladden, second-year law student and Conley’s research assistant. “This is one solution.”
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