There is a risk to more than just donors, however. Even people who have never contributed a DNA sample could be identified and genetically typed if a relative has ever donated DNA. That scenario is becoming more likely as recreational genetic genealogy sites gain popularity. These sites trace family trees in part through a genetic componentand they make contributed genetic information available to members of the public, often without the same level of controls used by research or medical institutions. Until now, the identity of donors was considered protected if demographic and genetic data were kept in different databases and certain information was masked in the demographic record.
Legislation to keep research institutes from releasing any demographic information about donors would protect patient privacy, but would eliminate the ability of researchers who have identified markers for a particular disease to also identify the ethnic or cultural background of those who might have it, Erlich says. The whole point of scientific research is to publish the results so other researchers can build on it and develop more effective treatments. On the other hand, genetic information can be misused to identify members of ethnic or racial groups targeted for discrimination or other repressive or exploitative purposes, Erlich says.
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