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:
Understanding risks and benefits of participation