Trust and Transparency in Quarantine

Comments open through March 5

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Parker Crutchfield, PhD

As of February 11, more than 1,000 people have died from the novel coronavirus, the vast majority of them in China. As the virus spreads, China has been implementing the largest quarantine in human history. The virus has spread beyond the borders of China, and has been observed in at least twenty-four countries. There is no way of knowing how effective the quarantine has been. It obviously didn’t prevent the virus’s spread, though it’s likely fewer people are infected because of it. Part of the reason that the quarantine has not worked to prevent the spread is that many in China evidently don’t trust those implementing the quarantine. About five million people left Wuhan before the quarantine locked down the city. And the images in this video are certainly not of a family trusting their government.

Trust and quarantine
A prominent account of what makes public health interventions permissible implies that public trust is necessary for public health interventions to be morally permissible. As a general rule, this is false. Public trust in Flint has been totally undermined. But in that city, public health interventions on the water supply are not only permissible, they are obligatory. So, it’s not true that trust is necessary. But that is not to say that public trust isn’t critical to the value of a public health intervention.

Trust and mistrust street signs image

Image description: two green street signs with white lettering, one reads “trust” with an arrow pointing to the right, the other reads “mistrust” with an arrow pointing to the left. Image source: Pixabay.

The value of a public health intervention, and its moral authority, is primarily a matter of the value of the benefit it achieves (the value of the cases prevented) minus the disvalue of the burdens it requires people to bear (the disvalue of social isolation). Trust may not be necessary, but it certainly impacts the benefits and burdens of a public health intervention. There is significant benefit in not having five million people evade a quarantine because they mistrust those implementing it. Who is more burdened, the family who fights tooth and nail the officials forcibly removing them from their home, or the family who goes willingly because they trust them? Mistrust creates burdens; trust promotes value. In other words, mistrust encourages people to break quarantine. If the goal is to encourage social isolation and compliance, public trust is key.

Trust and transparency
If trust is so important to the effectiveness of a quarantine, what factors promote trust? That same theory of the morality of public health interventions derives the value of transparency from the claim that transparency promotes trust. The idea is that the more open policy decisions, the more the public will trust them. As before, this is not generally true. Some research indicates that transparency actually undermines trust (De Fine Licht, 2011; Grimmelikhuijsen, 2014).

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Image description: A screen display on the side of a building showing “early discovery, early report, early quarantine, early diagnosis, early treatment” during the Wuhan coronavirus outbreak in Hefei, Anhui, China. Image source: Zhou Guanhuai/Wikimedia Commons.

That is, the more people know about policy implementation the less they trust the people implementing it. If accurate, this research suggests instead that if we want people to trust public health policies, information should be withheld from them. This is in line with earlier research that suggests what people really want is for decision-makers to be empathetic and non-self-interested and that, if they are, for them to make mostly non-transparent decisions. People may want “stealth democracy” (Hibbing and Theiss-More, 2002).

So, probably it is not generally true that transparency promotes trust. But quarantine might be a special case. When the public already mistrusts those implementing public health policies, it’s not clear that there is any way to rebuild trust other than by being transparent. China was already in a tough spot, after their mishandling of the SARS outbreak in 2003, about which officials withheld information from the public and the global health community. Combined with the attempted silencing of the coronavirus whistleblower and his recent death, officials’ actions set the stage for a mistrustful public and less effective quarantine.

The next outbreak
Given officials’ actions in response to SARS, the public response to attempts to control coronavirus was probably never going to be trusting. Regardless of when the next outbreak occurred, the public was never going to trust the interventions to control it, whatever they happened to be. That was determined in 2003. Transparency now won’t help trust now, and so it won’t help the effectiveness of the present quarantine or any of the other interventions, such as the disinfectant now being sprayed. The damage to the present is done. Sadly, given that officials have responded like they did in 2003, interventions aimed at controlling their next outbreak, whenever that happens to be, will be upon a mistrusting public. When that time comes, if officials choose to quarantine, it seems likely that that quarantine will elicit similar responses: people will evade and resist, grabbing door frames as they are pulled from their homes. The virus will not be contained as well as it could have been, and more people will get sick and die. Present transparency could have promoted future trust, greater compliance, and prevented sickness and death, but that opportunity has come and gone.

There is a lesson for local officials as they try to intervene on the ongoing water crisis in Flint, the PFAS scare in West Michigan, and, in my hometown, the threat of mosquito-borne illness. The lesson is: transparency now purchases trust later. And that trust may prevent suffering and save lives.

parker-crutchfield-cropParker Crutchfield, PhD, is Associate Professor in the Program in Medical Ethics, Humanities, and Law at the Western Michigan University Homer Stryker M.D. School of Medicine, where he teaches medical ethics and provides ethics consultation. His research interests in bioethics include the epistemology of bioethics and the ethics of enhancement, gene editing, and research.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, March 5, 2020. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

More Bioethics in the News from Dr. Crutchfield: Public Health Crisis Warrants Liberty RestrictionsWe Should Tolerate and Regulate Clinical Use of Human Germline Editing

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Brews and Views: Trust Me, I’m a Scientist!

Scientist [ˈsīəntəst] — a person who has expert knowledge.

Brews and Views logo with people, brain, DNA, and gear icons

Last month more than 100 faculty members and researchers attended the latest Brews and Views session: “Trust Me, I’m a Scientist! Responsibility and Accountability in Science.” The event series, presented collaboratively by the Center for Ethics and Humanities in the Life Sciences and the Institute for Quantitative Health Science & Engineering, features moderated discussions addressing fascinating and provocative areas of bioscience and engineering.

The event was moderated by Dr. Monique Mitchell Turner, Chair and Professor in the Department of Communication, College of Communication Arts and Sciences. Dr. Turner began with an audience response poll that asked attendees to consider both the role of institutional review boards regarding responsible and ethical research conduct, and the ethical obligations of scientists studying risky innovations that could potentially cause harm. Subsequent questions focused on the concept of dual use, which Dr. Turner clarified as referring to “technologies that alternately can be used for peaceful as well as for hostile purposes.” Regarding potential dual use harms, who is ultimately responsible: the principal investigator, the journal that published the work, or someone else entirely?

V211-social media

Image description: an illustration depicts four scientists holding a double helix, beaker, atoms, and a magnifying glass. Image source: vecteezy.com.

Discussant Dr. Heather Douglas, Associate Professor in the Department of Philosophy, College of Arts & Letters, examined moral responsibility in scientific endeavors, focusing on two qualities of dual use concerns, i.e., the intention of the researcher and that which might or might not be foreseeable. She clarified that when the ultimate use is readily predictable, ignoring the prospect of use for hostile purposes would be reckless, but unfortunately, many things are not predictable.

Dr. Douglas pointed out that the two checks on scientific endeavors include responsibility and accountability, but the conundrum is that those two checks are not necessarily synced — scientists can be held responsible for things which they are not accountable and accountable for things which they are not responsible. It’s reasonable to hold scientists accountable to good methodology, to their colleagues, and to society. But there are other actors who are accountable as well, including the institution (as well as journals that publish research). The paradox is that the more an institution enforces accountability checklists, the more an individual scientist might mistakenly feel that they’ve met their responsibility by simply complying with that checklist. Dr. Douglas urged that to be accountable, scientists have a responsibility to think beyond such checklists to imagine future possibilities including dual use concerns.

Discussant Dr. Victor DiRita, Rudolph Hugh Professor & Chair in the Department of Microbiology & Molecular Genetics, College of Natural Science, acknowledged that scientists need to be both responsible and accountable, but he pointed out that science “works” by advancing incrementally, building on the base of prior work. For this reason, he rejected the broad notion of dual use, since it is impossible to have sufficient imagination to accurately predict future nefarious use of any given innovation. To illustrate, he noted that dual use concerns are often related to “gain of function” in which research builds on and extends the capacity of previous work. He noted that governance, carried out through the vehicles of institutional policies is unable to predict such capacity extension, and therefore dual use itself is impossible to predict.

Dr. DiRita expressed worry that excessive focus on potential risks can blur the lines between real risk and perceived risk, possibly impeding the progress of important useful research. While institutional regulatory policies are well-intended, he is concerned about undue regulatory burdens in those labs that lack the resources necessary to be compliant. Moreover, he was in agreement with Dr. Douglas that such checklists erroneously allow scientists to believe that simple compliance with regulation is sufficient to meet their responsibilities, and that journals should share responsibility for publicizing dual use science.

Brews-Views-01-24-2020 Douglas Turner and DiRita photo

Image description: Pictured left to right are Heather Douglas, Monique Mitchell Turner, and Victor DiRita presenting to the audience at Brews and Views on January 24, 2020. Photo courtesy of Libby Bogdan-Lovis.

Brews and Views is collaboratively organized by Dr. Christopher Contag, Dr. Laura Cabrera, and Libby Bogdan-Lovis. Visit our website for more information on past events in the series.

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Bioethics for Breakfast: Can Pharmaceutical Cost Control Be Achieved Ethically with Surgical Precision?

Bioethics for Breakfast Seminars in Medicine, Law and SocietyPaula Cunningham and Craig Hunter presented at the February 6th Bioethics for Breakfast event, offering perspectives and insight on the topic “Health Reform: Can Pharmaceutical Cost Control Be Achieved Ethically with Surgical Precision?”

This year’s Bioethics for Breakfast series is focused on a central theme: “Is There a Cure for Our Sick Health Care System?” The series is generously sponsored by Hall, Render, Killian, Heath & Lyman.

There is virtually unanimous agreement among health policy analysts that something must be done to control health care costs, especially pharmaceutical costs, which are often a major burden for the elderly. Consumers and taxpayers are also demanding that health care costs be controlled and reduced, most often with regard to drugs. This is why the recent focus has been on the price of drugs. However, any practical proposal to reduce drug health care costs has been denounced as rationing and/or as a threat to medical innovation. The result has been political inertia and economic exuberance (for for-profit health care corporations), with $3.8 trillion in U.S. health spending in 2019 and projections of $6.0 trillion total health spending for 2027. What forms of drug-related health care cost control are you willing to accept for yourself and those you care about? What do you see as the ethical challenges that must be addressed by any effort to control such health care costs, especially for the elderly?

Speaker Paula Cunningham, State Director of AARP Michigan, highlighted the struggles that people in Michigan face regarding the price of prescription drugs, noting that some individuals travel to Canada because the cost there is drastically lower. Cunningham shared the AARP “Stop Rx Greed” campaign as an example of their advocacy work in this area. She also noted that there are several pieces of legislation being worked on in Michigan and at the national level, such as an importation bill, that would reduce prescription drug costs. She finally stressed that this issue is not just about data and facts, it is about people’s lives.

Speaker Craig Hunter, Director of Specialty Program Outcomes and Analytics for CVS Health, brought industry expertise to the discussion and provided an economic perspective on the issue. He shared three main points, the first being that we need to rethink the question “can medical outcomes be achieved ethically with surgical precision?” because economic structures in the U.S. are not set up in a way that drives synergy. Hunter then discussed the need for structural changes to encourage creative solutions. When asking those in attendance if they believed that drugs in the U.S. are a public good, a minority responded in agreement. Hunter pointed out that this question has been answered very differently in other countries. Finally, Hunter noted that, regardless of “right or wrong,” the market is responding to its own stimulus; the business has been incentivised for certain outcomes.

Attendee questions and comments came from a variety of perspectives, including physicians, legislative staff, and community leaders. There was discussion of direct-to-consumer advertising, drug patents, and the barriers that exist for the consumer within this complex system.

About the Speakers

Paula Cunningham
Paula Cunningham, MLIR, is State Director of AARP Michigan, which has more than 1.4 million members. She is former President of Lansing Community College, and in the business community was CEO of Capitol National Bank. She serves on numerous boards, including, but not limited to, Davenport University and McLaren Health Systems-Lansing. Paula is in the Michigan Women’s Hall of Fame and was the first African American woman in the country to be president of a majority owned bank.

Craig Hunter
Craig Hunter is the Director of Specialty Program Outcomes and Analytics for CVS Health, providing leadership and oversight for outcomes-based financial reconciliations negotiated across specialty drug and patient management products. Previously Craig worked at Eli Lilly, first as the Lead Outcomes Scientist for the U.S. Alzheimer’s and Oncology franchises, and later leading U.S. Outcomes Customer Engagement. Additional previous experience includes time consulting as well as Primary Investigator for a USAID-funded project examining the intersection of traditional and western medicine in South Africa. Craig earned his MPP from the University of Chicago and a BA in Communications (Rhetoric)/Political Science from Furman University.

About Bioethics for Breakfast:
In 2010, Hall, Render, Killian, Heath & Lyman invited the Center for Ethics to partner on a bioethics seminar series. The Center for Ethics and Hall Render invite guests from the health professions, religious and community organizations, political circles, and the academy to engage in lively discussions of topics spanning the worlds of bioethics, health law, business, and policy. For each event, the Center selects from a wide range of controversial issues and provides two presenters either from our own faculty or invited guests, who offer distinctive, and sometimes clashing, perspectives. Those brief presentations are followed by a moderated open discussion.
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Listen: Shared Decision-Making in Colorectal Cancer Screening

No Easy Answers in Bioethics logoNo Easy Answers in Bioethics Episode 20

This episode features guests Dr. Karen Kelly-Blake, Associate Professor in the Center for Ethics and Humanities in the Life Sciences, and Dr. Masahito Jimbo, Professor in the Department of Family Medicine at University of Michigan Medical School. Drs. Kelly-Blake and Jimbo discuss their NIH-funded study known by the acronym DATES—Decision Aid to Technologically Enhance Shared Decision Making—which addressed shared decision-making, decision aids, and patient-physician communication regarding colorectal cancer screening. The two researchers provide insight into the study and its results, also reflecting on what the process of shared decision-making means to them in the present day.

Ways to Listen

This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: “While We Walk (2004)” by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License. Full episode transcript available.

About: No Easy Answers in Bioethics is a podcast series from the Center for Ethics and Humanities in the Life Sciences in the Michigan State University College of Human Medicine. Each month Center for Ethics faculty and their collaborators discuss their ongoing work and research across many areas of bioethics. Episodes are hosted by H-Net: Humanities and Social Sciences Online.

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Dr. Laura Cabrera presents at 1st International Bioethics Congress

Laura Cabrera photoCenter for Ethics Assistant Professor Dr. Laura Cabrera traveled to Mexico City earlier this month to give a keynote presentation at the 1st International Bioethics Congress: Knowledge, Law and New Technologies in Health.

Dr. Cabrera’s presentation, “Neuroethical Aspects of Psychiatric Neurosurgery,” gave an overview of her work as part of the NEURON Consortium with Dr. Judy Illes (University of British Columbia) on media and public perceptions around psychiatric neurosurgery. The congress had several parallel tracks touching on a variety of important bioethics topics, including neuroethics, nanomedicine, clinical ethics, research ethics, biolaw, medical devices regulation, and translational medicine.

Cabrera-Intl-Bioethics-Congress-Mexico-01-2020-2

Image description: Dr. Laura Cabrera stands while presenting her talk to attendees at the 1st International Bioethics Congress in Mexico City. Photo courtesy of Laura Cabrera.

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Religious Coercion of Physicians: Whose Conscience Is It Anyway?

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Leonard Fleck, PhD

Neil Mahoney is 64 years old and has a terminal cancer with a predicted life expectancy of 4-16 months. He lives in Colorado, a state that approved an aid-in-dying law in 2016. His physician is Dr. Barbara Morris, 65, a geriatrician whom he has asked to provide him with the drugs needed to end his life. She has agreed to do just that.

However, Dr. Morris works for the Centura Health Corporation, a Catholic-Adventist hospital system. Dr. Morris was fired from her position when it became public knowledge that she was willing to help Mr. Mahoney to end his life. We should note that she had no intention of doing this within the walls of the hospital or any of its facilities. She would accomplish this in the privacy of Mr. Mahoney’s home.

Moral-Dilemma-Ahead-road-sign

Image description: a yellow road sign reads “MORAL DILEMMA AHEAD” in bold black lettering. Image by Liz McDaniel.

In justifying its firing, the hospital CEO said Dr. Morris could be fired for “encouraging” the patient to pursue aid-in-dying, even if she never actually provided or assisted in any other way his accessing the drugs he requested. The CEO cited as a basis for this position the Ethical and Religious Directives for Catholic Health Care Services. The directives state that Catholic health care providers (which include everyone working in the institution, whatever their religious commitments or lack thereof) “may never condone or participate in euthanasia or assisted suicide in any way” (emphasis mine). Instead, “patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.” Alternatively, the care of that patient should be transferred to another provider, presumably one willing to respect the choice of someone like Mr. Mahoney.

It should be obvious that there is something ethically incongruous about this position. Imagine my walking into a Catholic gun shop in a horribly depressed state of mind and asking the owner to sell me a gun so that I could blow my brains out. He expresses compassion for my awful life circumstances, urges me to seek psychiatric care, then explains that as a Catholic he could not sell me that gun, knowing my intention. Having said all that, he informs me that a mile away is another gun store owned by an atheist who would have no qualms about selling me that gun. Given his religious commitments, would sharing such information be ethically justified?

Let’s translate the answer to that rhetorical question into Mr. Mahoney’s situation. He went to that hospital to get care for his cancer. He did not go there to receive aid-in-dying. However, imagine this situation. His cancer treatment at the hospital is failing miserably. At this point he does request aid-in-dying since he has no interest in redemptive suffering, either for himself or anyone else.

The hospital could transfer him to another hospital where his wish could be fulfilled. However, that sounds like the situation of our Catholic gun shop owner. Alternatively, they could explain to him that it would be contrary to their corporate conscience to effect that transfer. In addition, they believe several doses of redemptive suffering would be therapeutic for his spiritual well-being.

Mr. Mahoney could retain an attorney who would point out that Mr. Mahoney has the legal right to leave the hospital against both medical and spiritual advice. Other patients, however, who might be in much worse medical circumstances (unable to be transferred) would not be able to exercise that right or the right to access aid-in-dying. That brings us to the crux of this essay.

Whose conscience should prevail in this situation? If a physician or other health professional were asked to participate in some way in a request for aid-in-dying, and if such participation were contrary to their deeply held religious or ethical beliefs, we (political authorities in a liberal, pluralistic, tolerant, democratic society) would respect those beliefs and allow them to avoid participating. This is equal and reciprocal moral respect. What would that require if Mr. Mahoney were this latter hypothetical patient stuck in that hospital? Perhaps that would require allowing a physician who was not attached to the hospital to enter the hospital for purposes of providing aid-in-dying. It is hard to imagine Centura agreeing to that.

The alternative would be to allow a member of their medical staff who believed providing aid-in-dying to a patient in these circumstances was both ethically permissible and obligatory to do just that. However, Centura has made clear that no member of that institution would be allowed to do that, thereby imposing their conscientious beliefs on hundreds of staff who might not agree with that belief. This seems contrary to the notion of reciprocal moral respect.

Centura would expect that Catholic physicians in secular hospitals would be allowed to refrain from participating in any act of aid-in-dying. Why not allow non-Catholic physicians (or liberal Catholic physicians) in Catholic hospitals to act in accord with their sense of compassionate conscientiousness in Mr. Mahoney-like situations? There is a political and ethical contradiction here: the hospital is invoking our liberal pluralistic political heritage to secure protection for their conscientious beliefs, but denying that same protection to staff and patients within their walls who disagree with that religious commitment.

The hospital might portray itself as a “religious institution,” though this is misleading at best. It is not a church whose membership is comprised of individuals who freely choose to endorse a specific faith perspective. Hospitals, whether having any religious affiliation or not, are public institutions accepting public money (Medicare, Medicaid, etc.) to care for patients with or without any religious faith. People seek health care in those institutions, not spiritual guidance, and certainly not spiritual coercion.

Noteworthy in today’s health care environment is the acquisition of smaller hospitals by larger hospital chains, including Catholic hospitals absorbing secular hospitals and imposing a Catholic identity on them. Almost 20% of all hospital beds in the United States today are under Catholic auspices. Beyond that, these hospital chains are buying up all sorts of medical practices as a way of assuring a steady (and profitable) stream of patients and patient revenue. In effect, patients are being drafted (unbeknownst to themselves) into a religious environment, potentially to become soldiers in the cause of redemptive suffering.

More problematic, as noted earlier, was that Dr. Morris was going to provide aid-in-dying in the privacy of Mr. Mahoney’s home. Mr. Mahoney was likely not a saint. Still, it is unconscionable that he would have to undergo redemptive suffering for the sake of an institution to which he owed no allegiance to satisfy the conscience of that institution and its CEO.

Finally, a Canadian Catholic hospital was recently legally obligated to make available aid-in-dying to patients in accord with Canadian law. That service would be provided in a building adjacent to the hospital and owned by the hospital. Physicians employed by the hospital would be free to provide that service. This, I conclude, is a reasonable compromise that reflects mutual moral respect regarding an ethically complex situation rather than uncompromising redemptive religious righteousness. This also represents the equal political respect required for the peaceful functioning of a liberal pluralistic society and health care system.

Leonard Fleck photoLeonard M. Fleck, PhD, is Acting Director and Professor in the Center for Ethics and Humanities in the Life Sciences and Professor in the Department of Philosophy at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, February 6, 2020. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

More Bioethics in the News from Dr. Fleck: Health Care and Social Justice: Just Take Two Aspirin for Your Tumor If You Cannot Afford Your Cancer Care; Medicare For All: This Is Going to HurtGreed Is God: The Divine Right to Avaricious Drug PricingGene Editing: God’s Will or God’s Won’t

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Center faculty published in ‘Brain Sciences’ on deep brain stimulation patient study

Laura Cabrera photoKaren Kelly-Blake photoCenter for Ethics Assistant Professor Dr. Laura Cabrera and Associate Professor Dr. Karen Kelly-Blake, along with Dr. Christos Sidiropoulos of the Department of Neurology & Ophthalmology, are co-authors of a new article in Brain Sciences. Their article “Perspectives on Deep Brain Stimulation and Its Earlier Use for Parkinson’s Disease: A Qualitative Study of US Patients” appears in a special issue on “Brain Stimulation and Parkinson’s Disease.”

Abstract
Background: Deep brain stimulation (DBS) is being used earlier than was previously the case in the disease progression in people with Parkinson’s disease (PD). To explore preferences about the timing of DBS, we asked PD patients with DBS whether they would have preferred the implantation procedure to have occurred earlier after diagnosis. Methods: Twenty Michigan-based patients were interviewed about both their experiences with DBS as well as their attitudes regarding the possible earlier use of DBS. We used a structured interview, with both closed and open-ended questions. Interviews were transcribed verbatim and analyzed using a mixed-methods approach. Results: We found that the majority of our participants (72%) had high overall satisfaction with DBS in addressing motor symptoms (mean of 7.5/10) and quality of life (mean of 8.25/10). Participants were mixed about whether they would have undergone DBS earlier than they did, with five participants being unsure and the remaining nearly equally divided between yes and no. Conclusion: Patient attitudes on the early use of DBS were mixed. Our results suggest that while patients were grateful for improvements experienced with DBS, they would not necessarily have endorsed its implementation earlier in their disease progression. Larger studies are needed to further examine our findings.

The full text is available online via MDPI.

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