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
Understanding medical research findings involves two key assumptions: that the research is trustworthy and that the outcome of that research better enables a physician to take care of the patient. Trustworthy science depends not just on a well thought-out protocol, but on scientists who are trustworthy themselves. More than just being well-intentioned, this requires scientists to be acutely aware of the ways in which they’re being incentivized to cut corners. Those small shortcuts may add up to make a catastrophic difference. And since being objective is a cornerstone of being a scientist, reflecting on potential biases is a must.
Bumper: Does the Field of Science Push Researchers to the Edge of Trustworthiness?
There’s a difference between trustworthy science and trustworthy scientists. The first one’s kind of easy: trustworthy science is a result of well-designed science carried out carefully according to procedure.
The second one is more about the person doing the science: Is that person trustworthy? Do they subscribe to the norms of science? For example, do they let their personal bias influence the way they find their results?
Those kinds of things are more difficult to regulate.
In fact, we found in some research that we did that the organization of science actually pushes scientists in ways that are more dishonest.
So, the intense competition for research funding, for example, means that scientists start to cut corners in their research, start to do things to make sure they get published, to make sure they get the next grant.
So, this excess of competition and the lack of a collaborative attitude about science really creates an environment that promotes untrustworthy science.
If you are a researcher, you need to understand how these forces in the field of science are pushing you to the edges of being trustworthy, and you need to reflect hard and long on doing good science and yet being successful as a researcher. And I know that’s a serious challenge.
Bumper: Caregivers versus Researchers: Conflicting Priorities in Building Trust
One of the particular challenges in medical research is balancing patient outcomes and research outcomes. And what’s interesting about this is that caregivers and researchers have different goals.
A caregiver’s goal is care for the patient—giving the patient the best care. A researcher’s goal is generalizable knowledge. So, their first goal is not making sure the patient has good care but making sure that good science is done.
And those goals can conflict. And what’s interesting about that is we have prospective review for research to make sure that researchers don’t let their goal of getting generalizable knowledge harm the subjects of research.
But clinical care, we have retrospective review because we trust that a clinician’s first goal is to help a patient, and if something goes wrong, then we have an ethical review.
We presume trustworthiness for clinicians. But the first goal of researchers is to science and not to patients.
A really beautiful example of this is in the movie Wit, where you see a perfect illustration of this tension between the goals of research and the goals of clinical care.
Bumper: Trust at the Intersection of Bioethics and Big Data
With the increasing use of big data, patients and research subjects really fear an invasion of their privacy.
They’re not really certain where their data are going and how they will be used and if somehow they’ll come back to haunt them, where an insurance company will find something out about you and raise your insurance rates or an employer will find something out about you and deny you employment because of your potential for illness.
Another thing we found is people are worried about how their data will be used. We did a study looking at if those kinds of things matter to people, and people said, “I don’t want my data being used for bioweapons research.”
People also said, “I don’t want my data being used by a for-profit company to make money that’s not shared with the public, because I’m freely giving them my data and they’re cashing in on my data for their own private ends.”
The answer to this, we think, is better governance of data banks and biobanks.