Respect and Protect: Ethical Scientific Research
Scientific research has produced important social benefits and health improvements such as development of vaccines for polio and treatments for HIV. However, scientific research has also raised troubling ethical questions. Probably the most infamous example in the U.S. was the Tuskegee Syphilis Study. Started in 1932 mostly among poor sharecroppers in Alabama, the study enrolled 600 Black men with syphilis and 201 men without syphilis who received medical exams, free meals, and burial insurance. The men were told they were being treated for “bad blood,” but were purposely not treated for syphilis—even worse, efforts were made to prevent adequate access to penicillin treatment after it became the drug of choice in 1947. The study ended in 1972 after news reports condemning the study were published and a government appointed advisory panel determined that the study was “ethically unjustified”. A detailed timeline of The Tuskegee Study can be found here.
The Tuskegee Study publicly highlighted the need for standard guidance to protect all human research participants. In response, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was created in 1974 to develop guidelines as well as to oversee and regulate all research that involves people. The resulting Belmont Report is one of the most important documents this group created to provide a moral framework for the protection of human volunteers in medical research, which we still use today. The Belmont Report outlined three primary ethical principles that guide how researchers conduct and monitor research studies.
Respect for Persons:
This calls for research to allow people to freely volunteer for research with adequate and appropriate information about the research study. An informed consent process is required for all research studies, and allows volunteers to choose what will and will not happen to them if they agree to participate in a study.
All research volunteers are treated ethically, protecting them from harm, and making all reasonable efforts to secure their well–being. This is similar to the medical ethic of “do no harm,” and extends the concept to research and makes it an obligation for researchers. For example, the Tuskegee Syphilis Study did harm by withholding life-saving treatment from men in the study.
This isn’t just about punishment, but more about ensuring that any risks and benefits to scientific research are equally distributed. The enrollment of poor Black sharecroppers in the Tuskegee study was an injustice because syphilis affected people of all racial and socio–economic groups in the US. In addition, justice demands that research findings supported through public funding are available to everyone who may benefit.
These core principles guide all human research activities and are in place to ensure that studies like the Tuskegee Study are never repeated. We have Institutional Review Boards (IRBs) that review, approve, and monitor all human research studies to ensure that they adhere to the highest ethical standards.