Please send a letter or email to Dr. Francis Collins, the Director of the National Institutes of Health.
Francis S. Collins
Director of the National Institutes of Health
9000 Rockville Pike
Bethesda, Maryland 20892
Dear Dr. Collins,
As you must know, the Tuskegee Syphilis Experiment was one of the most egregious and shameful violations of human rights in the history of American science and medicine.
What you may not be aware of is the fact that, on its website, the Centers for Disease Control refers to the victims of the Tuskegee Syhphilis Experiment as "participants." (http://www.cdc.gov/tuskegee/faq.htm)
The CDC itself describes the Tuskegee Syphilis Experiment as a study that "involved 600 black men – 399 with syphilis, 201 who did not have the disease. The study was conducted without the benefit of patients' informed consent. Researchers told the men they were being treated for 'bad blood,' a local term used to describe several ailments, including syphilis, anemia, and fatigue. In truth, they did not receive the proper treatment needed to cure their illness. In exchange for taking part in the study, the men received free medical exams, free meals, and burial insurance. Although originally projected to last 6 months, the study actually went on for 40 years."
This raises the question of whether the CDC is such a systemically racist organization that it still does not fully understand what was wrong with the Tuskegee Syphilis Experiment. As long as the victims of the experiment are referred to as "participants," one could say that the Tuskegee Syphilis Experiment has still not been fully ended or recognized for the blot on American science and medicine that it is even though President Bill Clinton apologized for the experiment in a White House ceremony on May 16, 1997.
Hopefully, as a scientist of conscience, you will use your power to change the word "participants" to "victims" out of respect to the men affected, their families and all victims of medical experiments like the Tuskegee study.
If there is any hesitation about making this change, perhaps an international convocation of medical ethicists and civil rights activists could meet in Atlanta at the CDC to debate the matter.
Another matter related to this issue needs to be raised. The man most responsible for blowing the whistle on the Tuskegee Syphilis Experiment, Peter Buxtun, has never been sufficiently honored for his persistence in bringing the experiment to the world's attention. It was an effort that took over six years and it met with initial resistance at the CDC. Surely you could use your influence to inspire Congress and the White House to rectify the matter. If President Obama awarded Peter Buxtun the Presidential Medal of Freedom at the same time that the CDC stopped referring to the victims of the Tuskegee Syphilis Experiment as "participants," it would send a message to everyone in the scientific and medical community that when they see something unethical occurring they should follow Peter Buxtun's example and speak up. As science and medicine become more complicated, the public will increasingly depend upon the moral perspicacity and courage of insiders to protect it from human rights abuses.
Thank you for your consideration.