Editor’s note: This essay responds to an invitation (issued here and here) to submit commentaries on the ethical implications of partnerships between social media companies and biomedical researchers. The invitation is ongoing.
Social media data can provide the power for genetic research with far-reaching implications. New initiatives continue to develop, including DNA.LAND, which hopes to collect data from customers of genetic testing services; Genes for Good, a research study that hopes to utilize social media to build large pools of data; and commercial firms like 23andMe. While there is a necessity to build a giant pool of genetic and health information to find meaningful links, there is also a large gap in the consideration of participants and their privacy. In all of these efforts, there is no guarantee of absolute security and always a risk of sensitive data being stolen or reused in harmful ways.
Users often do not fully understand the risks involved in providing sensitive medical information. Americans polled in early October 2015 underestimated knowledge of their medical data being stolen. A February 2015 survey indicated medical identity theft can cost victims an average of over $13,000. Nor are all users aware of their search histories being stored by companies like Google and AOL; for example, people impacted by the AOL Search Data leak in 2006 indicated they were unaware their searches were being archived. Data from search histories and social media can be helpful to research, but can it also mislead researchers, especially if the algorithm being applied is inaccurate, as in the case of Google Flu Trends in 2013.
While it can be difficult to document stories of harm, particularly where personal privacy is the issue, improper utilization of search records and genetic information has led to at least one case of inaccurate identification of a suspect in a crime.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.