The Evolution of Trust in Bioethics

The Evolution of Trust in Bioethics

Applications

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.

Transcript

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.

Keep up with the latest insights on trust

Related Videos

How trust shapes the medical field by Raymond De Vries.

How Trust Shapes the Medical Field: A Sociologist’s Perspective

Foundations
Contributor / Raymond De Vries
Raymond De Vries Bioethics Trust and Networks,Generalized Trust Trust is central to the work of bioethics. In fact, you might say bioethics is a trust check on medicine and medical research, offering advice on morally fraught issues, giving voice to patients’ moral concerns, and solving bioethical problems.

I’m a sociologist, and my field actually has a pretty unique take on bioethics. We’re less interested in finding out what’s morally right and more interested in what this new way of being moral means.

So, we want to ask, who decides what’s a moral question? Who’s empowered to solve these moral questions? Who gets to say what’s right and what’s wrong?

Bumper: What Makes the Sociological Perspective Unique

Peter Berger identifies three essential features of the sociological perspective.

First of all, sociology is a relativizing discipline; that is, we’re always interested in how ideas and behavior are situated in their social context, in their historical period, in the culture and the society in which they occur.

Secondly, sociology is a debunking discipline; that is, it never accepts the taken-for-granted explanation of the way things are.

Finally, sociology is an unrespectable discipline.

So, rather than looking for explanations of society from the powerful (from leaders, from managers), we look for stories that come from the dispossessed (from followers, from the people who are being managed).

For example, a physician’s view of trust will be much different than a patient’s view of trust

It’s important to get both of those perspectives when you’re trying to understand trust.

Bumper: Questioning the Impact of Industrialization on Trust

Sociological views of trust, then, are naturally skeptical about taken-for-granted explanations of trust. Let me illustrate.

"Sociology as a discipline was born in the 17th, 18th, and 19th centuries, and it was a period marked by rapid social change."

Industrialization, urbanization, secularization, the rise of mass democracy—all these things were changing the way people lived together.

And the early sociologists were interested in finding out how these changes were affecting the way people related to each other.

Now, the easy answer to that question was to see that these rapid changes were diminishing trust and diminishing relationships between people.

"Ferdinant Tönnies looked at these changes and lamented the disappearance of small, close, friendly, trusting societies that he referred to in German as “gemeinschaft” societies, into larger impersonal societies that he referred to as “gessellschaft” societies.

He saw these as threatening the very foundations of trust.

But Emile Durkheim, one of the founders of sociology, challenged this view. He didn’t see these changes as bringing the end of solidarity but the shift from one form of solidarity into another one.

This new form of solidarity, which he called “organic solidarity,” which was based on interdependence of people in a society characterized by division of labor. So, with the division of labor, people had to depend on each other in new ways.

Bumper: Questioning the Role of Trust in Modern Society

Let’s fast-forward about 100 years to the work of Anthony Giddens, a sociologist from the United Kingdom.

Like Durkheim, he challenged taken-for-granted ideas about the sources of trust. For example, many people think citizens in modern society are less trusting than in the good old days when people lived in small communities.

But Giddens points out that every moment of our everyday lives is characterized by trust. Every day, in innumerable ways, we have to exercise trust in our daily lives.

Well, when you go to work, when you live in your home, you are trusting an architect who designed the buildings that you’re living and working in. You’re trusting that these buildings will stay standing, that they’ll provide you with a comfortable and safe place to live.

So, Giddens makes this same point that what might look like impersonal society actually rests on a foundation of trust.

What’s interesting for us is to take a look at how this perspective, how this thinking about trust from a skeptical, contextual point of view, can be applied to looking at the field of bioethics and how trust operates in bioethics.
Raymond De Vries is a sociologist, and his field actually has a pretty unique take on bioethics.

The Rise of Bioethics in Response to Medical Distrust: Key Findings

Research
Contributor / Raymond De Vries
Raymond De Vries Bioethics Institutions and Context,Distrust 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?”
Judging trust and trustworthiness is important in all aspects of our lives even grocery shopping.

Differentiating Trust and Trustworthiness: A Sociologist’s Perspective

Foundations
Contributor / Bruce Carruthers
Bruce Carruthers Sociology Government,Institutions and Context,Legal Guarantees,Reputation Management,Social Psychology,Vulnerability As a social scientist, I’m very interested in trust as it concerns people because really society, human cooperation, human coordination, all of the activities that we do together, really depend on trust.

And you might kind of wonder, well, trust sounds a bit like faith? You know, we’re just going to take people on faith.

And don’t we have a bunch of ways of coordinating our activity and making sure that the left hand knows what the right hand is doing, and I can figure out what’s going on vis-a-vis my employer or all the people that I interact with — and don’t we have a bunch of formal coordination devices like contracts or instructions or standard operating procedures?

Why aren’t those good enough? Why do we have to go beyond that and trust people? And there’s a couple of reasons for this. And one of them is that, as wonderful as these formal devices are, they really do have limits.

And one of the reasons is that contracts and other instructions, lists, standard operating procedures, all of these devices — they’re always incomplete; that is, the world is more complicated and unpredictable than we can anticipate.

And so, stuff will happen that will effect whatever it is you’re doing with these other people. It will have an impact on your ability to execute whatever it is you’re trying to do, and it’s not going to be in the contract what’s up.

You might think to yourself, “Well, maybe trust isn’t such an issue if we go to the marketplace.” Let’s think about markets and capitalism and self-interest and competition — maybe that’s a world in which contracts and other formal devices will be sufficient.

And once you’ve got an airtight contract, you don’t have to worry about the personal character or the trustworthiness of the people you’re dealing with, because you’ve got a good contract and you hired a good lawyer.

So, the most famous person who thought about this sphere, of course, was Adam Smith in his famous book The Wealth of Nations, which really did talk about the virtues of capitalist production and competitive markets and so forth.

And I think it’s very telling that before he wrote The Wealth of Nations, Adam Smith wrote a book on The Theory of Moral Sentiments.

And in this previous book, he posited that people are linked through strong bonds of sympathy and empathy and trust, and that on top of this, we’re able to have markets and capitalism and all that kind of fun stuff.

It was clear to me (and I think clear to Smith) that some measure of some baseline, some foundation of trust is very important even in social settings where we might think that the issue of trust can be solved or avoided.

You might want to ask, when does trust arise? I’ve talked about it as kind of ever-present — it’s all over the place. But really, there’s two elements that drive trust situations.

One of them is uncertainty, and the other is vulnerability — that is, people are uncertain about what others are going to do (they don’t know what’s going to happen in the future), and they’re vulnerable to what those other people do to the extent that their interests and those other people’s actions are intertwined.

So, the trick for dealing with a trust situation is really addressing these two key elements: either trying to deal with uncertainty by acquiring more information and learning (or trying to figure out) what is likely to happen in the future.

…Or by managing your vulnerabilities and thinking about ways to mitigate or reduce the impact (or the potential harm) that others’ actions, future actions, could have on your interests.

So, this kind of sets up a generic recipe book for how to deal with trust situations. How do people trust?

People rely on a lot of heuristics, rules of thumb, to decide who is trustworthy and who is not, and that distinction is really important because you can’t go through the world trusting everyone, and you can’t function in the world if you trust no one.

And so, what you have to do at the simplest level, is kind of put everyone into two bins: there’s people that are trustworthy; there is people who are not. And you want to be able to trust the trustworthy and avoid those who are not trustworthy

I’m going to offer a couple of distinctions that help clarify the discussion of trust. And one of them is the difference between trust and trustworthiness. And this really speaks to who is doing the trusting and who is being trusted.

One party trusts the other, and the other party may or may not be trustworthy — that is, they deserve the trust. But someone who is trustworthy may not be trusted, and someone who is trusting may end up trusting someone who is not trustworthy.

So, these two things have to be kept separate. Another distinction is the distinction between generalized and relational trust.

Generalized trust really speaks to the question of how you deal with strangers. Do you trust abstract institutions? Do you trust the average citizen that you might run into on the street?

That kind of a thing — where you’re really dealing with someone with whom you have no relationship and about whom you have no prior information. What kind of ambient or generic level of trust do you have?

Relational trust is, what happens after you start to get to know someone? What happens after you start to develop a social relationship?

You have a history together; you have contracts; you have prior transactions. That is a very particular and non-anonymous form of trust, and it is really driven by the nature of the interaction that you have with that individual.

Other pages in Videos:

Pages in The Trust Project at Northwestern University