NASA’s Twin Study May Never Be Published

Privacy concerns could stymie NASA’s study of Scott and Mark Kelly

Mark and Scott Kelly
NASA/Robert Markowitz

NASA is beginning it unprecedented study on the effects of space flight on twins—by following Scott and Mark Kelly, the twin astronauts, the agency hopes to learn more about the effects of long-term space travel. But as Scott Kelly prepares for Friday’s journey to the International Space Station, questions are being raised about whether privacy concerns will prevent the study from ever seeing the light of day.

Scott Kelly will be part of NASA’s first one-year crew, which will help the agency prepare for eventual Mars exploration by conducting research on both Scott and his Earth-bound brother. Discover News reports that the mission will mark the first “orbit-versus-Earth comparative analysis of two genetically identical people,” looking at data on everything from the twin’s vision to their behavioral and mental health.

But the twins will also have their genome sequenced and studied—results that Nature’s Alexandra Witze reports “may never be published” should sensitive medical information be revealed. Though companies like 23andMe and Genentech claim that they can keep genetic data anonymous, that’s a luxury that won’t be shared by the easily-identifiable Kelly twins, who could decide to limit or refuse access to their genetic data for privacy reasons.

However, the possibility that NASA’s genetic studies may never reach the public eye doesn’t necessarily mean that the data won’t be used by the agency. In a release, NASA notes that data from the mission will be used to see if there are ways to reduce the risk of future long-duration missions to places like Mars. Though the brothers may opt not to release their genomic sequence to the public, it’s unlikely they would withhold data from the historic tests from the agency who made them possible.

David Warmflash of the Genetic Literacy Project predicts that genetic privacy will become a bigger issue for ordinary people in the coming years, too, as safeguards fail to keep pace with innovation. Despite calls for stricter genetic privacy rules, he reports, genetic information can easily be cross-checked against metadata to help “triangulate the identity of a certain person.” There’s no need to worry about genetic privacy if you haven’t participated in a medical study or submitted your genetic information in order to get more information about your family history or genetic roots, though. At least, not yet.