Bioethics Forum Essay
Response to Call for Essays: Social Media for Genetic Research
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. Additionally, doxxing, a process of searching the Internet for personal data of particular people and using it against them, could be applied to genetic and health information.
People will sometimes accept negative outcomes of an activity if they feel the benefits outweigh the risks. For example, users will share on a social media site that sells their information to for-profit companies because they value the social media service. In addition, people will share their information publically if they believe it will be helpful to others in a wider initiative, and if the process is easy, fun, and personally beneficial to the participant. An ethical answer to how to govern the use of social media data in research would view people as more than consumers of social media or providers of genetic information.
The Nuffield Council on Bioethics offers three suggestions for ethical governance of data initiatives: accounting for norms of access and disclosure to data, respect for individual values and interests, and professional conduct being governed in the public interest.
The consent process is one place to start applying these considerations. Terms of service and consent documents have become less comprehensive, and, at the same time, many people fail to read the full terms of service. Multimedia learning tools can potentially aid in the consent process, but they should serve as a supplement, not a replacement, for counseling on consent. One example of an improved consent process is the Personal Genome Project’s requirement for participants to pass a quiz to demonstrate informed consent. Creating these learning tools can be best done with participant input. Developing and utilizing improved terms of service and informed consent documents will help people better understand the risks and benefits of participating in genetic initiatives.
Another place to improve is in the governance of genetic and health initiatives that utilize data from social media. HIPPA and GINA were enacted to prevent harm by the release of private medical information, but new tools and their implications require new assessment and addressing of the risks involved. For example, improved regulations would provide protection for social media users from use of their data in a manner not covered by the terms and conditions of the social media outlet. In these new regulations, potential for benefits from the application of users’ data must be balanced with minimization of harm to the individual participants. Leaks of genetic information can cause harm not only to the individual, but also their family members. In our efforts to make meaningful connections between data points, we should not lose sight of the people who will benefit from our studies.
Alyson Gamble is the science librarian at the Jane Bancroft Cook Library of New College of Florida and USF Sarasota-Manatee.