A new paper just published in PLOS ONE examines the motivations and characteristics of people who openly share the results of direct-to-consumer genetic testing using the web platform OpenSNP. The team of authors, who are affiliated with the University of Zurich, University of Cambridge, and Goethe University in Frankfurt, found those who shared their data were motivated by a desire to learn more about themselves; to advance medical research and improve genetic testing; and because they considered it fun. The researchers noted "Whereas most respondents were well aware of the privacy risks of their involvement in open genetic data sharing and considered the possibility of direct, personal repercussions troubling, they estimated the risk of this happening to be negligible." Among the paper's authors was Effy Vayena, who spoke at the Consortium's recent conference on research ethics. You can see her talk here.
Wednesday, May 10, 2017