Researchers must conduct their research in a just manner. They should treat their participants fairly, for example, by giving them adequate compensation for their participation and making sure that benefits and risks are distributed across all participants. For example, in a study of a new and potentially beneficial psychotherapy, some participants might receive the psychotherapy while others serve as a control group that receives no treatment. If the psychotherapy turns out to be effective, it would be fair to offer it to participants in the control group when the study ends.
At a broader societal level, members of some groups have historically faced more than their fair share of the risks of scientific research, including people who are institutionalized, are disabled, or belong to racial or ethnic minorities. A particularly tragic example is the Tuskegee syphilis study conducted by the US Public Health Service from 1932 to 1972 (Reverby, 2009). 1 The participants in this study were poor African American men in the vicinity of Tuskegee, Alabama, who were told that they were being treated for “bad blood.” Although they were given some free medical care, they were not treated for their syphilis. Instead, they were observed to see how the disease developed in untreated patients. Even after the use of penicillin became the standard treatment for syphilis in the 1940s, these men continued to be denied treatment without being given an opportunity to leave the study. The study was eventually discontinued only after details were made known to the general public by journalists and activists. It is now widely recognized that researchers need to consider issues of justice and fairness at the societal level.
“They Were Betrayed”
In 1997—65 years after the Tuskegee Syphilis Study began and 25 years after it ended—President Bill Clinton formally apologized on behalf of the US government to those who were affected. Here is an excerpt from the apology:
So today America does remember the hundreds of men used in research without their knowledge and consent. We remember them and their family members. Men who were poor and African American, without resources and with few alternatives, they believed they had found hope when they were offered free medical care by the United States Public Health Service. They were betrayed.
Read the full text of the apology at http://www.cdc.gov/tuskegee/clintonp.htm.
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