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More Control

Volunteers giving biological samples increasingly want control over what happens to those samples or compensation for having given them, the Boston Globe reports.

One woman tells the paper that she'd wanted to help researchers learn about the heart condition that runs in her family, but was unwilling to provide samples because researchers neither promised to tell her the results nor to pay her. She eventually did give a sample to the startup company DNAsimple, which paid her $50.

"Innovation and progress will save lives eventually," she tells the Globe. "[But] there has been an over-assumption and a gross expectation of patient altruism."

Other donors want to know what researchers learn. "If you study my DNA, just let me know what you find," Stacey Tinianov, who has breast cancer, adds. "I don't think that is too much to ask."

The paper also notes that the US Department of Health and Human Services and other agencies have proposed that researchers need to obtain patients' permission to study blood or tissue samples left over from medical procedures, consent they currently don't need to get. However, the Globe adds that some organizations like National Academies of Sciences, Engineering and Medicine and the Association of American Universities oppose this rule change because it will slow medical research.

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