Wall Street Journal: What Should You Ask Before You Give Up DNA?
The Wall Street Journal takes a look at the privacy risks that can arise from people voluntarily donating their DNA for research or other reasons. There have been several recent controversies over the unknowing use of individuals’ DNA reasons beyond what was stated when the samples were taken. Arizona State University recently settled a lawsuit by the Havasupai Indians. DNA samples that were given to university researchers to study the tribe’s high rate of diabetes were also used — without their consent, tribe members say — “to study many other things, including mental illness and theories of the tribe’s geographical origins that contradict their traditional stories,” reported the New York Times.
A few months ago, Texas announced that, as part of a lawsuit settlement agreement, it would destroy five million blood samples taken from babies and used for research without their parents’ consent. The blood was originally gathered to screen for birth defects. The Texas Tribune later revealed that Texas officials also “were turning over hundreds of dried blood samples to the federal government to help build a vast DNA database.”
The Journal reports:
At the Minnesota State Fair [...] you can stop by the University of Minnesota’s building and give samples of your and your children’s DNA for the university’s Gopher Kids Study.
As the Minneapolis Star Tribune reports, researchers are collecting information, including the genetic kind, to see if the fair is an effective way to recruit and stay connected with study subjects. (Families are told to return for follow-up for the next two years.) Eventually researchers want to recruit thousands of kids in an attempt to study “what genes are involved in making a child grow and develop normally,” according to the study’s website.
It’s not the only unconventional outlet for collecting DNA samples. Incoming Berkeley freshmen were invited to provide cheek swabs ahead of orientation. [...]
The California-based Center for Genetics and Society was a critic of that effort, raising questions about “inadequate informed consent, potential breaches of privacy, and possible conflicts of interest.” Marcy Darnovsky, the group’s associate executive director, says handing over DNA samples to a research effort is more weighty than giving away your Social Security number, since, she tells the Health Blog, you can get a new SSN. But “once you give someone your genetic information, it doesn’t matter if you destroy the sample” since the data live on, she says.
“The reason that people participate [in research] is because they want to help science move forward … but we want the science to move forward in a responsible way” that doesn’t violate privacy or abuse people’s trust, she says. One worst-case scenario: the data somehow “makes its way to somewhere you don’t want it to be,” such as an employer who gets the news that an employee has a predisposition to early-onset Alzheimer’s disease.
Possibly related posts: