BridgeHIV

Ethical Scientific Research

Respect and Protect: Ethical Scientific Research

Scientific research has brought significant social benefits and health advancements. This includes vaccines for polio and effective 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. In 1932, a study began among mostly poor sharecroppers in Alabama. It enrolled 600 Black men with syphilis and 201 men without syphilis. The men without syphilis 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, when penicillin became the first choice for treatment in 1947, efforts were made to limit access to it. The study ended in 1972 after news reports condemning the study were published. 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 made it clear that we need proper guidelines to safeguard all human research participants. In 1974, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was formed. Its goal was to create guidelines and oversee all research involving people. The Belmont Report is a crucial document created by this group. It sets a moral framework for protecting human volunteers in medical research. We continue to use it today. The Belmont Report describes three essential ethical principles. These principles guide researchers in conducting and monitoring their studies.

Respect for Persons:
People should be able to freely choose to take part in research. They must have clear and complete information about the study to make informed decisions. All research studies require an informed consent process. This allows volunteers to choose what will and will not happen to them if they agree to take part in a study.

Beneficence:
All research volunteers are treated ethically. Protecting them from harm and making all reasonable efforts to secure their well-being. This is like the medical ethic of “do no harm.” It also extends this idea to research, making it an obligation for researchers. The Tuskegee Syphilis Study harmed the men in the study by withholding life-saving treatment.

Justice:
This isn’t only about punishment. It’s also about making sure that risks and benefits in scientific research are shared fairly. Enrolling poor Black sharecroppers in the Tuskegee study was unjust. Syphilis affected people of all races and income levels in the US. Justice also means that research findings funded by the public should be available to all who can benefit.

These core principles guide all human research. They help ensure studies like the Tuskegee Study never happen again. We also have Institutional Review Boards (IRBs) that review, approve, and monitor all human research studies. They ensure that studies adhere to the highest ethical standards.