The goal is to create the continent’s first cross-disciplinary guidelines for collecting, storing and sharing data and specimens

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Administrators at the MD Anderson Cancer Center in Houston, Texas, yesterday tried to reassure alarmed employees that its recent dismissals of faculty members alleged to have broken federal funding rules were not connected to race or ethnicity

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It’s generally “ethically unacceptable” agrees Dr Ruth Faden, the founder of the Johns Hopkins Berman Institute of Bioethics. Nevertheless, she said that the patient’s rights and interest have to be balanced with the potential benefits of the research to humanity as a whole

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The president of FamilyTreeDNA, one of the country’s largest at-home genetic testing companies, has apologized to its users for failing to disclose that it was sharing DNA data with federal investigators working to solve violent crimes

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In managing vast databases of genetic information, the NIH has something to learn from Facebook

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Fears that foreign governments are tapping U.S.-funded research for valuable information have reached the nation’s largest research funder, the NIH. Last week it sent a letter to more than 10,000 research institutions, urging them to ensure that NIH grantees are properly reporting their foreign ties

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Dr. Jeffrey Kahn, director of the Berman Institute, raises some cautions. “There’s kind of a range of issues that people need to think about before they swab their cheek and send their credit card,”. Kahn said that besides the potential of unearthing long-buried family secrets, there’s the issue of what happens to the data. Many consumers don’t realize that if they agree to all the terms, their information is likely sold

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Holly Fernandez Lynch writes, “Nevertheless, even the upswing still leaves quite a bit of the glass empty: Results from more than 1 in 4 trials have still not been properly reported. The ethical consequences are substantial, and the government should be using its considerable enforcement authority to put an end to it. But it isn’t.”

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