Opinion: Get to Know Why People Openly Share Genomic Data | The Scientist Magazine®

"In a recent study, published this week in PLOS ONE, we thus set out to characterize the motivations of 550 people who had decided to share their genomic data on openSNP. The study is the first attempt to describe open data sharing activities undertaken by individuals without institutional oversight.

We found that health concerns, though prominent, were not the users’ primary or only motivation to be tested and share their data. Rather, it was ancestry that was most commonly mentioned. When asked specifically why they decided to openly share their SNP data, 86 percent of respondents indicated wanting to learn about themselves as relevant, followed by contributing to the advancement of medical research (80 percent), improving the predictability of genetic testing, and considering it fun to explore genotype and phenotype data (both 76 percent). Moreover, most users are still concerned about privacy protection but take the risk under the assumption that it is reasonably acceptable.

In our study we therefore highlight that it is crucial to consider benefits, risks, and developments that stretch beyond the health spectrum. We ought to pay attention to the value users attach to being tested and to sharing data also in terms of contributing to the common good of research or seeking connection to other people and places.

The nature of today’s health data is evolving. Along the way, we are learning how to extract new forms of value from those data. And whereas vast repositories of genomic data might give companies unprecedented power, new technologies have also ushered in an era of new possibilities for citizen science. This scientific involvement of the public is opening new ways to engage with science. It’s been 10 years since Watson had his genome sequenced. Today, more and more citizens can do the same. Imagine what could happen in the next decade."