I imagine that many of us grew up hearing the saying, “Practice what you preach.” As a parent, I’ve been tempted to say, “Do as I say, not as I do.” We aren’t the only ones who are vulnerable to falling short of our principles. The same temptation occurs in healthcare and medical research.
Recently, the Associated Press released an exposé of more than 40 studies where medical principles were violated. Healthy people were deliberately infected with the flu, hepatitis, malaria, or even cancer in order to find effective medical treatments, or simply out of scientific curiosity.[1] The research subjects came from the margins, such as mental hospital patients, prison inmates, and people who were already seriously ill. Some prisoners were induced by cigarette money; others weren’t even told what was being done to them.
These studies clearly violated the four principles that are the cornerstone that governs medical ethics and research using human subjects. Guidelines for human subject researched are based on The Belmont Report, one of the most frequently read documents in thais area medical ethics. These four principles, developed in the 1970s, have become know as “principlism.” Let’s look at each principle one by one.
The first principle is autonomy or “respect for persons.” This principle highlights the right of each person to make their own choices without coercion. Doctors and researchers must ensure informed consent. They need to respect the medical decisions made by each person, and refrain from influencing those decisions through money or gifts. Children and the mentally disabled, who cannot exercise their autonomy, receive special protection so that medical decisions are made in their best interest.
The second principle is beneficence, or “do good.” This moral obligation resembles the Good Samaritan rule: helping the stranger on the side of the road. Physicians must balance this moral duty against the autonomy of the patient and their right to say “no,” even to a presumed good.
The third principle used to be the heart of medicine: nonmaleficence, or “do no harm.” This rule must be followed impartially, including caring for the prisoner of war or the presidential assassin. Patients and research subjects must not be harmed, whether through neglect, carelessness, or intent. Surgery under general anesthesia for wart removal creates unnecessary risk and harm. Denying helpful drugs to sick patients who are in a clinical trial is another example of harm.
The last principle is justice. This one is more complex, and includes such aspects as the fair and equal treatment of persons and the just distribution of resources. Healthcare providers are constantly challenged to distribute health care resources fairly and without discrimination. The principle of justice is played out in emergency rooms every day through the triage of patients according to the severity of their symptoms, rather than their ability to pay or their social standing.
These four principles—“respect people” (autonomy), “do good” (beneficence), “do no harm” (nonmaleficence), and justice—aren’t just suggestions. Research that violates them is clearly wrong. Recognizing and understanding these principles is “everyday bioethics.” All of us, whether parents, physicians or researchers, must practice what we preach.
[1] Mike Stobbe, “Past Medical Testing on Humans in US Revealed,” Associated Press, February 27, 2011, http://www.dailyherald.com/article/20110227/entlife/110229603/ (accessed March 30, 2011).