Perspective: Health-Related Social Media Should Protect Privacy

In a perspective piece published in the Journal of the American Medical Informatics Association, Jingquan Li -- an associate professor of computer information systems at Texas A&M University -- writes that the growing popularity of health-related social networking websites underscores the need for such sites to have a comprehensive privacy framework in place, FierceHealthIT reports.

According to Li, research suggests that users of social networking sites often lack enough information to "make privacy-sensitive decisions." Even when social networking site users have sufficient data, they are "likely to trade-off long-term privacy for short-term benefits," Li writes.

Li notes that the creation of an effective privacy framework for health-related social networking sites should:

  • Encourage users to be fully engaged in guarding their own privacy;
  • Provide users with the ability to monitor how data flows on the site; and
  • Ensure accountability for non-medical uses of users' health data.

Li also calls for the passage of new legislation to protect the health data privacy of social networking site users. He writes that such legislation should:

  • Require social networking sites to provide individuals with options to control how their health data are used for non-medical purposes; and
  • Prohibit inappropriate commercial uses of individuals' health data, such as uses that could result in discrimination (Bowman, FierceHealthIT, 4/19).

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