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August 29th, 2011

Are Some Patients Joining Tuskegee 2.0?

By Matthew Katz, MD

Editor’s Note: Matt Katz, M.D., is a member of the External Advisory Board for the Mayo Clinic Center for Social Media.

One of the first medical research fiascoes I learned about was the Tuskegee syphilis experiment.  Are today’s patients headed unknowingly for something similar online?

The Internet is a remarkable information resource and makes it easy to share with others.  But while you search and share online, you’re giving away information about you and your health.  How is your health data being used, and by whom?

In 1932, the U.S. Public Health Service and Tuskegee Institute began a longitudinal study of 600 African-American sharecroppers -- 399 of whom had syphilis.  At the time, there was no cure.  When penicillin became widely available as standard therapy after World War II, the scientists continued to observe and didn't treat syphilitic patients, leading to further illness for the patients, their spouses and children.  The study continued until 1972, six years after Dr. Peter Buxtun raised ethical concerns.

As a result of Tuskegee, the Belmont Report and Office for Human Research Protections set new standards for medical research:

  • Establish boundaries between research and clinical practice;
  • Respect for persons [patients] and their autonomy;
  • Beneficence [doing good];
  • Justice [fair allocation of resources].

These standards are routinely applied in research to:

  • Informed consent
  • Understanding risks and benefits of participation
  • Subject selection

In my opinion, the Internet is a great global social experiment, but I’m not sure how well designed it is for our health.  Marketers, pharmaceuticals and others can datamine health information about us. We may share personal information thinking we’re anonymous, when we’re not. Split-testing, a potent marketing technique used to optimize response rates, is not all that different from a randomized trial and can be used to influence health care decisions.

Tuskegee generates the following questions for me about social media:

  • Who’s ensuring our safety online?
  • Do privacy and patient protection fit into the “Wild West” of the Internet?
  • Do we get a balanced view of the risks and benefits that come with online health interactions?
  • Do people realize the Google ads that pop up are a targeted randomized trial?

Sometimes it’s difficult to get access to your doctor…or your doctor is difficult.

Doctors could do a better job adhering to these standards, but why not expect more online as well? Maybe we should consider making our online health decisions and privacy as important to our dignity and well-being as it is supposed to be offline.

Much of that responsibility is ours, but we deserve similar protections online.  Why should our intimate thoughts and vulnerabilities be involuntarily put in a database used to influence our health care decisions, whether it’s a clinical research study or marketing firm?  And if a data mining company learns something important to improve our health, how do we know it will be shared with us?

If we want to avoid possible harm from misuse of our personal health information, the easiest place to start is to examine the ecosystem for our online interactions.  Health-oriented social networks will be the subject of my next post.

Tags: Legal & Ethical Issues, Patient Involvement

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