The Rise of Bioethics in Response to Medical Distrust: Key Findings
Research
CONTRIBUTOR / Raymond De Vries
CO-DIRECTOR, CENTER FOR BIOETHICS AND SOCIAL SCIENCES IN MEDICINE
PROFESSOR, DEPARTMENT OF LEARNING HEALTH SCIENCES AND THE DEPARTMENT OF OBSTETRICS AND GYNECOLOGY
UNIVERSITY OF MICHIGAN / Bioethics in Sociology
When you see a heavily police-patrolled area, what’s your immediate thought? Though the police may be there as a proactive step to reassure residents of a safe neighborhood, you’d probably think that their presence is a response to high crime. It’s this same thought pattern that causes attempts to formalize trust in bioethics to end up weakening trust in physicians. DeVries illustrates how the new norm of consent agreements, which has replaced traditional good faith in neighborhood doctors, has counterproductively inspired doubt and concern in patients.
Transcript
Bioethics is particularly interesting for people who want to study trust because it arose when a much-trusted profession, medicine, lost the trust of the public.
Essentially, bioethics is the child of distrust in medicine and medical research.
The erosion of trust in medicine began in the 20th century with frightening medical experiments and frightening new technologies.
Trust in medicine was diminished when the public learned of the horrendous experiments done by the Nazis in World War II, but also when they learned about experiments being done in the United States by the public health service.
The most famous of these is the Tuskegee experiment, where poor black men in Alabama who had syphilis were denied treatment for their disease by researchers who wanted to learn about the natural course of syphilis.
But the sources of this distrust in medicine and medical research is not just about the poor conduct of researchers and about new technologies.
To fully understand public distrust, we have to look at the larger picture of medicine in society.
Bumper: Tracing the Erosion of Trust in Medicine
In his book Trusting Doctors, Jonathan Imber points out that physicians in the United States began to lose their authority after World War II when they began to be valued for their technical competence rather than their personal integrity.
Another sociologist Andrew Abbott points out that the changing nature of the physician work force altered the relationships of trust between patients and physicians.
In earlier times, when physicians came from the communities where they worked, trust was automatic. But increasingly, patients are having physicians who come from different parts of the country, from different countries, from different ethnic groups.
And trusting relationships that were assumed when these parties came from the same community now had to be regulated by codes of conduct and by ethics committees.
And finally, it’s important to note that all these changes were occurring in the 1960s and 1970s in a period of great civil unrest, in a period characterized by the civil rights movement, the women’s rights movement, the gay rights movement—all of these movements began to challenge the authority of existing institutions, like religion, like law, like medicine, like family.”
Bumper: Does Bureaucracy Enhance or Undermine Trust?
The result of this increased suspicion of medicine was increased oversight in the form of research ethic committees called “institutional review boards,” or IRBs, in the United States and clinical ethics committees.
What is gained by this formalization of trust? Looked at from the point of view of sociology, you might say that what this does is simply move trust around.
So, trust that used to exist between a patient and a physician or between a research subject and a researcher has now been shifted to trust that has to exist between a patient or research subject and an ethics committee, and that ethics committee and the researcher.
This bureaucratization of trust is a cause for much debate. On the one hand, there are people who say these committees actually facilitate research.
On the other hand, there is evidence that moving trust in this way actually prompts more devious behavior on the part of researchers as they try to evade the regulations of the research ethics committee.
Some colleagues and I did research looking at self-report of misconduct by researchers, and we discovered a significant number of researchers were willing to admit that they ignore the rules of institutional review boards.
Bumper: Bureaucracy, Trust, and Informed Consent
Perhaps the best example of the formalization of trust in medicine and medical research is the use of informed consent. Informed consent is the process of explaining what will happen to a person in the clinic or in research and then asking for their consent to participate in care or research.
This is an important tool of bioethics, one that is assumed to protect a person’s autonomy—that is, the right to say what happens to your body—but also to promote trust in medicine and medical research. But does it?
There’s an irony here that the use of informed consent can actually promote distrust. How does that happen? Let me give you an example.
Studies have shown that more police on the street creates more fear of crime than it diminishes, because people start to ask, “Why are there so many police around? There must be more crime in my neighborhood.”
Informed consent works in a similar way. When given to a patient or a research subject, the natural response is, “Is there some reason I should distrust you?”