Who “owns” the healthcare data about you?

Bioethics Public Seminar Series purple and teal icon

The 2020-2021 Bioethics Public Seminar Series continues next month on March 24. You are invited to join us virtually to learn about artificial intelligence and healthcare data ownership. Our seminars are free to attend and open to all individuals.

Healthcare Artificial Intelligence Needs Patient Data: Who “Owns” the Data About You?

Adam Alessio photo
Adam M. Alessio, PhD

Event Flyer
Zoom registration: bit.ly/bioethics-alessio

Artificial intelligence (AI) is increasingly used in modern medicine to improve diagnostics, therapy selection, and more. These computer algorithms are developed, trained, and tested with our patient medical data. Certainly beyond the healthcare space, many companies—from Facebook to Amazon to your local pub—are using our consumer data. This is data about you, but is it your data? What rights do you have versus the owners of the data? Does medical data used for the benefit of future patients deserve different treatment than consumer data? This lecture will explore examples of AI and an evolving view of data ownership and stewardship in medicine.

March 24 calendar icon

Join us for Dr. Alessio’s online lecture on Wednesday, March 24, 2021 from noon until 1 pm ET.

Adam M. Alessio, PhD, is a professor in the departments of Computational Mathematics, Science, and Engineering (CMSE), Biomedical Engineering (BME), and Radiology. He earned a PhD in Electrical Engineering at the University of Notre Dame and then joined the University of Washington faculty where he was a Professor in the Department of Radiology until 2018. He moved to MSU to be part of the new CMSE and BME departments and the Institute for Quantitative Health Science and Engineering. His research is focused on non-invasive quantification of disease through Artificial Intelligence-inspired algorithms. Dr. Alessio’s research group solves clinically motivated research problems at the intersection of imaging and medical decision-making. He is the author of over 100 publications, holds 6 patents, and has grant funding from the National Institutes of Health and the medical imaging industry to advance non-invasive cardiac, cancer, and pediatric imaging. Dr. Alessio is also the administrative director of the new Bachelor of Science in Data Science at MSU and is looking for partners in the development of a data ethics curriculum at MSU.

Can’t make it? All webinars are recorded! Visit our archive of recorded lecturesTo receive reminders before each webinar, please subscribe to our mailing list.

Lessons on eating in a pandemic

Listen to this story
Bioethics in the News purple and teal icon

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

By Megan A. Dean, PhD

Though COVID-19 is not a food-borne illness, the coronavirus outbreak has drastically changed the way many of us eat. According to one survey from mid-2020, 85% of people in the U.S. “have altered their food habits as a result of the pandemic.”

Image description: Restaurant operating during the COVID 19 pandemic has a sign posted: “Please wait outside until your name is called, or if you received a text message. Thank you!” Image source: thom masat/Unsplash.

While the bare supermarket shelves of early March have been replenished (except for the bucatini shelf, apparently), many are still struggling to get adequate food. An estimated 54 million people in the U.S. now face food insecurity, “the disruption of food intake or eating patterns because of lack of money and other resources.” This is an increase of over 17 million since the start of the pandemic.

Another change is where people eat and with whom. Restrictions on indoor dining and shifts to online work and school mean that many are cooking and eating at home more often than before. Stay-at-home orders, gathering restrictions, and the closure of dining rooms in workplaces and institutions also mean that many are limiting their dining companions to those within their own households. For some, this means eating alone. For example, in summer 2020, 87% of nursing home residents ate most of their meals in their rooms alone, up from 32% prior to the pandemic.

Emotional or stress eating is also on the rise. It may come as no surprise to those of us who have endured 2020 and the first few weeks of 2021 that many are using food as “a way to suppress or soothe negative emotions, such as stress, anger, fear, boredom, sadness and loneliness.” These are just a few of the ways the pandemic has impacted eating in the U.S., but each offers lessons about some of the ethical challenges we face regarding food and eating.

Who stays hungry?

In the U.S., many of those who face food insecurity are children: 30 million children regularly rely on schools for free or reduced-price meals. But due to pandemic-related school closures, only 15% of eligible kids are now receiving these meals. As Cory Turner notes, many school districts have shifted to a meal pickup plan, but lack of transportation and time off from work mean that some caregivers cannot retrieve meals during scheduled pickup times. While some school districts have made creative efforts to distribute meals in other ways, many children go without.

These logistical challenges echo ongoing issues with the distribution of other goods and services essential to good health. Mitchell Katz argues that the U.S. health care system assumes that patients are middle-class; accessing medical care often requires reliable transportation, time off during working hours, or paid sick leave, which many working-class people simply do not have.

Image description: People wearing gloves and face coverings work to package food into plastic bags for distribution. Image source: Joel Muniz/Unsplash.

Like health care, food assistance is only helpful if it is accessible to those who need it. Emergency food benefits programs like the Pandemic EBT give eligible children’s caregivers much more flexibility, enabling them to purchase groceries on their own schedule. However, only six states and Puerto Rico have renewed this program for the 2020-2021 school year.

The value of eating

Asked to look ahead to 2021, many people said that when it comes to food, they were most excited to once again share meals with family and friends.

This desire for shared dining highlights the fact that eating is a rich source of value that extends far beyond nutrition, pleasure, or ostensible effects on body weight, whatever those New Year’s diet ads try to tell us.

There is social value in sharing a meal with coworkers, friends, or neighbors; cultural value in holiday meals, wedding feasts, funeral receptions, graduation toasts; aesthetic value in enjoying food and drink in the ambiance of a restaurant, café, or bar. Eating with others can also have moral value; it provides opportunities to show respect for others, build moral character, and establish moral community.

Some of this value can be found in eating at home. But for many, foregoing meals with friends, dates, colleagues, and loved ones has impoverished day-to-day life. This is not an argument against public health restrictions on dining; there are good, evidence-based reasons for many of these regulations (though more should be done to support restaurants and food service workers while indoor dining remains high risk). But acknowledging these losses enables us to mitigate them where possible, and where not, at least recognize they are worth mourning.

Eating and self-control

A final lesson can be learned from emotional eating, which is often framed as a lapse in self-control, “giving in” to cravings for unhealthy but comforting foods. I have argued elsewhere against the idea that such “mindless” eating is necessarily bad. Here I’ll highlight one way that pandemic-related increases in emotional eating point to the limited role of self-control in determining how we eat.

Image description: A person is sitting down eating a bowl of popcorn with a remote in their other hand. Their face from their mouth up is out of frame. Image source: JESHOOTS.COM/Unsplash.

For many, the pandemic has meant the collapse of eating routines and schedules alongside significant changes in physical proximity to food. Instead of having access to food only in the work lunchroom or on scheduled breaks, some people now work all day next to their refrigerators. Parents who would normally spend the school day working, running errands, socializing, or exercising, may spend much of their day in the kitchen preparing food for their kids.

As Quill R. Kukla puts it, our routines, schedules, and social and material surroundings constitute scaffolding for our actions. They constrain and enable what we do. When we are able to exercise self-control or agency, it is often because we have supportive scaffolds in place. So it’s entirely unsurprising that we eat differently when our daily structures of living have changed so radically. Recognizing this can help us avoid unjustly shaming ourselves and others for our eating, and also help us strategize more effectively about how to change that eating, if we so desire. It is important to acknowledge that now—as always—our ability to construct and inhabit supportive scaffolding is limited by work and family obligations, resources, living situations, and the like. And as many of us have learned over the past year, sometimes much of that is out of our direct control.

Megan A. Dean photo

Megan A. Dean, PhD, is an Assistant Professor in the Department of Philosophy at Michigan State University. She works in feminist bioethics, with a focus on the ethics of eating.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Tuesday, February 4, 2021. 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.
Continue reading “Lessons on eating in a pandemic”

What do LGBTQ patients want from their healthcare providers?

Bioethics Public Seminar Series purple and teal icon

The 2020-2021 Bioethics Public Seminar Series continues later this month with a panel of MSU alumni. You are invited to join us virtually – events will not take place in person. Our seminars are free to attend and open to all individuals.

Controversies and Complexities in LGBTQ Health Care

Event Flyer
Zoom registration: bit.ly/bioethics-jan27

Do you feel prepared to provide excellent care to your LGBTQ patients? Calls for social justice and corrective actions are being mounted by various and intersectional constituencies. These calls for social change must be reflected in improved clinical care, as well. What do LGBTQ patients want from their healthcare providers? Health professionals often think that they do not serve LGBTQ+ people, but Williams Institute data reports about 3-10% of the U.S. population of adults, depending on state, identify as a sexual and gender minority person. What are some of the ethical and clinical challenges that clinicians and patients face? This seminar will address these broadly understood health issues that impact the LGBTQ community, as we aim toward an inclusive and equitable health delivery system. Bring your questions and take part in this exciting and timely conversation with a panel of MSU alumni.

Jan 27 calendar icon

Join us for this online lecture on Wednesday, January 27, 2021 from noon until 1 pm ET.

Photo of Emily Antoon-Walsh
Dr. Emily Antoon-Walsh

Emily Antoon-Walsh, MD, MA, FAAP (she/her), is a board-certified pediatrician who specializes in the care of hospitalized infants, children and adolescents. She graduated from the Michigan State University College of Human Medicine in 2013 with an MD and an MA from the Bioethics, Humanities and Society program. She completed her pediatric residency at Seattle Children’s Hospital/University of Washington. As a medical student she worked to improve medical education around LGBTQ issues. As a resident she interviewed trans youth and their parents about barriers to gender-affirming care. She now practices hospital pediatric medicine, which presents special challenges and also privileges in providing LGBTQ-affirming care for families. She works in a community hospital in Olympia, WA, where she lives with her wife and child who is a true Pacific Northwest baby and loves the outdoors on the rainiest, cloudiest of days.

Photo of Barry DeCoster
Dr. Barry DeCoster

Barry DeCoster, PhD (he/him), is an Associate Professor of Bioethics and Philosophy at Albany College of Pharmacy and Health Sciences. His research interests focus on the overlapping areas of bioethics and philosophy of science & medicine. DeCoster is interested in how vulnerable patients—such as LGBTQ health, racial minority health, and women’s health—engage and respond to the particular needs of their communities. He is also interested in the lingering impact of the medicalization of LGBTQ health and how queer patients are themselves constructed as both ethical and epistemic agents. Dr. DeCoster received his B.S. in Biotechnology & Humanities from Worcester Polytechnic Institute, and his M.A. and Ph.D. in Philosophy from Michigan State University. He spent much time working at MSU’s Center for Ethics as a grad student, and remembers that time fondly as a source of mentorship. Dr. DeCoster enjoyed the opportunity to teach fantastic students for three years at MSU’s Lyman Briggs College.

Photo of Henry Ng
Dr. Henry Ng

Henry Ng, MD, MPH, FAAP, FACP (he/they), is a physician, educator and advocate for LGBTQ health. Dr. Ng has been involved in LGBTQ health care since 2007 and he is currently a physician in the Center for LGBTQ+ Health and the Transgender Surgery and Medicine Program at the Cleveland Clinic Foundation. He completed his BS and his MD at Michigan State University. He completed his residency and chief residency in Internal Medicine/Pediatrics at MetroHealth Medical Center. In 2012, he completed a Master’s in Public Health degree at Case Western Reserve University with an emphasis on Health Promotion/Disease Prevention for LGBT populations. He served as an associate editor for the journal LGBT Health and is a senior associate editor for the journal Annals of LGBTQ Public and Population Health.

Can’t make it? All webinars are recorded! Visit our archive of recorded lecturesTo receive reminders before each webinar, please subscribe to our mailing list.

Bioethics for Breakfast: Health Reform Unmentionables: Long-Term Care

Bioethics for Breakfast Seminars in Medicine, Law and Society

Anne Montgomery and Sarah Slocum, co-directors of Altarum’s Program to Improve Eldercare, presented at the December 10 Bioethics for Breakfast session, offering perspectives and insight on the topic “Health Reform Unmentionables: Long-Term Care.”

While past Bioethics for Breakfast events were held in person, this year’s series is taking place virtually. The series is generously sponsored by Hall, Render, Killian, Heath & Lyman.

A lot of attention has been given recently to the social, political, ethical, and economic challenges associated with long-term care. Nursing homes and long-term care facilities have suffered during the COVID-19 pandemic, but at the same time, the pandemic has given these issues more public visibility. There are several large questions to consider: What are the major challenges facing long-term care today? How should long-term care be financed? What would motivate individuals to purchase long-term care insurance? What are the consequences for Medicaid if we see increased reliance on Medicaid for long-term care funding (keeping in mind continued growth of the elderly population and dementing illness)? What policy options are available for addressing all these challenges? Should those policy options be left to the states? What, if any, is the role of the federal government?

Discussing financing, proposals, and reforms related to long-term care insurance in the U.S., Sarah Slocum reminded attendees of our present-day circumstances by giving a brief overview of Medicare and Medicaid, beginning in the 1965 when they were passed at the federal level. The original design did not include long-term care. By the 1980s, the version of Medicaid could bankrupt entire families if one member of a married couple needed to enter a nursing home. In the 1990s, spousal impoverishment provisions were enacted to protect the assets of individuals. Many states began regulating long-term care insurance, however, policies remained very expensive and were very hard to market. For those who did choose to purchase long term care insurance, their premiums increased as they got older. Bringing us to the present, Slocum discussed Michigan reforms that began to be planned in 2017. One option that the Michigan legislature will have to consider is a 0.5-1% payroll tax contribution for all individuals to fund a long-term care program. Slocum shared the example of a new program in the state of Washington, noting that watching how well the program does could help inform decisions made in Michigan and other states.

Anne Montgomery then offered insight into policy considerations at the federal level, based on her work in Washington, D.C. The cost of long-term care insurance remains a challenge to many people. Additionally, one in five middle-income seniors will become impoverished, typically turning to Medicaid to cover their long-term care costs. More than half of Americans who enter old age today will have a long-term care need for constant attendance, something that is very costly. Montgomery shared the possibility of federal social insurance, though that possibility depends on how legislation is drafted and considered by Congress. Discussing Medigap, Montgomery suggested adding long-term care services and supports to the existing coverage. Montgomery also brought forth the need for a bigger and better trained long-term care workforce, and the need for other infrastructure and home and community-based service improvements. Montgomery then shared predictions on what the Biden administration may be looking to do beginning in 2021, touching on the Affordable Care Act and the Center for Medicare and Medicaid Innovation. Finally, Montgomery discussed the need for culture change and quality improvement within nursing homes, such as moving to a person-centered model.

The discussion portion of the session included questions about how hospice and palliative care interface with long-term care insurance, how family caregivers could be compensated under a new model, and the overall appetite of the American public for the changes discussed by Slocum and Montgomery.

Related Resources

About the Speakers

Anne Montgomery
Anne Montgomery is Co-Director at Altarum’s Program to Improve Eldercare, where she oversees a portfolio of quality improvement and research projects focused on older adults and long-term services and supports. Montgomery has more than two decades of policy experience working on Medicare, Medicaid and related programs. Montgomery served as a Senior Advisor for the U.S. Senate Special Committee on Aging, where she developed policy included in the Affordable Care Act, including policy to upgrade quality in the nursing home sector; expand options for states offering home and community-based services; improve direct care worker training; and improve state Medicaid assessment processes. Montgomery also worked for the House Ways & Means Committee, the Government Accountability Office and the Alliance for Health Policy in Washington, D.C., and was awarded the Atlantic Fellowship in Public Policy to conduct comparative analysis of family caregiver policy in the U.S. and the UK. Montgomery received an MS in Journalism from Columbia University.

Sarah Slocum
Sarah Slocum joined the Altarum Program to Improve Elder Care in the fall of 2016. As Co-Director of Altarum’s Program to Improve Eldercare, Ms. Slocum strives to improve the quality of life and care for frail elders living with disability. Just prior, she served 13 years as Michigan’s State Long Term Care Ombudsman, leading advocacy for Michigan citizens living in long term care facilities. She has led policy change efforts in the state Medicaid program, long term care regulations, the Certificate of Need program, and with the Michigan legislature. Ms. Slocum has testified on nursing home quality before the U.S. Senate Special Committee on Aging. She has worked for over three decades in aging and long term care advocacy at the state and national levels. Ms. Slocum received an MA in Bioethics from the Michigan State University College of Human Medicine.

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.

CRISPR Dangers Highlight the Need for Continued Research on Human Gene Editing

Listen to this story
Bioethics in the News purple and teal icon

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

By Jennifer Carter-Johnson, PhD, JD

The excitement and potential of CRISPR to treat severe genetic conditions by editing disease-causing DNA has taken an unexpected hit. A recent Wall Street Journal article highlighted the unexpected results from a CRISPR study in which attempts to edit a human gene responsible for blindness resulted in the loss of the entire chromosome from the cells in the embryos. These results echo another study conducted in human cell lines published earlier in 2019.

CRISPR is a targeted gene editing process that allows scientists to direct genetic modifications with far more precision than prior procedures. CRISPR has been touted as a gigantic leap in the ability to modify DNA by creating or repairing pinpoint DNA mutations without affecting other areas of the chromosome on which the gene resides. The recent study indicates that the technique might not be as straightforward in humans – and thus neither will be its use to fight disease.

Blue DNA double helix puzzle with missing pieces
Image description: A partially assembled puzzle that is an image of blue double helix DNA molecule structures. Image source: Arek Socha/Pixabay

CRISPR Technology – Promise and Problems

The value in CRISPR mediated genetic modification can be seen in a wide variety of biotechnology products, such as genetically modified crops and new biologics. But perhaps the most exciting and most controversial potential for CRISPR can be found in the desire to modify embryonic genomes to remove genetic abnormalities for which we currently have no cure.

This promise of embryonic gene editing is appealing not only because it would remove the condition from the child born from the gene-edited embryo, but also because the offspring of that child would also be free of the condition. CRISPR gene editing – because it is done at the embryonic stage – creates germline mutations that are passed to future generations. In a therapeutic use of CRISPR, those mutations would be cures for often untreatable diseases.

However, it is this very promise that raises many of the problems with CRISPR embryonic gene editing. Much debate has surrounded embryonic gene editing. Until this recent news, there were fears that CRISPR may make gene editing too easy. The technological development of CRISPR in embryonic gene editing is moving at a breakneck pace as scientists around the world are working on procedures. Biohackers work in their garages and livestream the use of CRISPR to edit their own genomes.

Many are debating which genes should be targeted and how fast the research into actual trials should proceed. Most agree that severe diseases would be the best place to start, but should the technology be deployed for cosmetic benefits such as eye color, or diseases for which a treatment exists? The dangers of CRISPR editing are unclear, and there has been an informal moratorium on the use of the technology to create children. Despite that, there has been at least one rogue scientist who has created genetically modified embryos and brought them to full term birth.

International Policy on Human Gene Editing

The scientific research is not occurring in a vacuum. Each country decides how CRISPR can be used in its medical system – both when the technique is safe enough and on which diseases it should be used.

An international commission recently pronounced that the technology is not ready for clinic implementation because scientists don’t understand the full safety issues surrounding its use in human embryos. The commission described some of the potential clinical uses in the future and outlined a basic safety protocol for approval.

One of the creators of CRISPR, Jennifer Doudna, has also spoken out against applying CRISPR too hastily to embryonic gene editing. 

Based on the recent studies showing loss of chromosomes, the international commission and other scientists are correct to call for a moratorium on clinical embryonic gene editing.

Blue and green DNA double helixes and binary code
Image description: An abstract image of blue and green double helix structures and binary code (zeros and ones) against a black background. Image source: Gerd Altmann/Pixabay

CRISPR – The Path Forward

The setback in CRISPR gene editing does not mean that the technology and research should be discarded. The potential to change lives is too great; however, the dangers of use with our current understanding are even greater. So how do we move forward with CRISPR in embryonic gene editing? The answer must include balance – in research strategies and in voices.

While the technology is not ready for clinical use, and we have not yet determined which uses would be appropriate if it were available, the science should not stand still. The research surrounding CRISPR gene editing will yield insights into human biology that we cannot predict. For example, the loss of chromosome length in human embryonic cells undergoing CRISPR treatment seems to be different than the response of other species of embryonic cells. And debates about the appropriate use of the technology will allow us to discover more about ourselves as humans. 

As we debate the best way to develop and deploy CRISPR technology, we should look to a variety of stakeholders. Scientists have a solid track record in understanding when recombinant DNA technology has potentially hazardous implications. In the 1970s, the Asilomar Conference allowed scientists to put together research guidelines that allowed the technology to be developed without harming public health. In fact, the international scientific consensus not to use the technology such as described above indicates that scientists are beginning that work. Such a moratorium on clinical uses gives us time to understand how to deploy the technology in the safest manner.

Additionally, there is a role for the voices of the patients whose lives could be changed by the technology. Patients may not be in the best place to judge when the technology should be deemed safe enough to deploy, but they certainly will have input about which mutations cause hardships that merit the risk of germline editing. Many of these patients already work with scientists on potential treatments for their diseases. CRISPR discussions may open another avenue for many.

Finally, there is a role for legal regulation of the use of CRISPR. Governments should listen to the voices of scientists and potential patients in drafting these regulations. But as shown by the example of at least one rogue scientist, there needs to be teeth to the moratorium on CRISPR clinical use at this time. CRISPR and its use in human gene editing raise complicated issues and hold great promise as a powerful tool to defeat genetic diseases. The development of those technologies will not be straightforward or without risk and will require more basic science research to achieve clinical efficacy. But with proper planning, we may learn more about ourselves as humans on the path to a cure.

Jennifer Carter-Johnson photo

Jennifer Carter-Johnson, PhD, JD, is Associate Dean for Academic Affairs and Associate Professor of Law in the Michigan State University College of Law. Dr. Carter-Johnson is a member of the Michigan State Bar. She is registered to practice before the U.S. Patent and Trademark Office.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Tuesday, December 15, 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. Carter-Johnson: Biohacking: How a DIY Approach to Biology Can Shape Our FutureWeb of Interests Surrounding Medicines Makes Patient Access Increasingly DifficultHumanity in the Age of Genetic ModificationDefining The Spectrum of “Normal”: What is a Disease?Dawn of False Hope: Spread of “Right To Try” Laws across the U.S.

Continue reading “CRISPR Dangers Highlight the Need for Continued Research on Human Gene Editing”

The White House outbreak: How to criticize irresponsible leaders without getting stuck in the illness blame game

Listen to this story

Bioethics in the News purple and teal icon

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

By Sean A. Valles, PhD

In a twist of fate, there was an outbreak of COVID-19 at a White House celebration of the nomination of Amy Coney Barrett for the Supreme Court of the United States. This elicited a wide range of reactions to seeing a gathering of opponents of strict COVID-19 control measures being hurt by the very pandemic they have downplayed. While others have worried about the moral philosophy of taking pleasure in others’ suffering, or the hypocrisy of evading rules one publicly espouses, I have a different worry. A poll shortly after the White House outbreak found that a majority of respondents believed that Trump had acted “irresponsibly” in how he had handled his personal risk of infection from people he interacted with. While I do not worry about the president being blamed for his illness, I do worry about the wider cultural practices of 1) victim-blaming by attributing a person’s illness to their personal moral failure, and 2) insisting that health is a matter of individual choice. While the distinction might not seem important at first, I will argue there is an important difference between victim-blaming the ill and holding leaders accountable for setting bad examples with their conduct and other leadership failures. The first kind of blame is toxic in a society, and the second kind of blame is an important part of a well-functioning democracy.

President Donald Trump in the Oval Office nominating Amy Coney Barrett to the Supreme Court
Image description: President Donald J. Trump and First Lady Melania Trump pose for a photo with Judge Amy Coney Barrett, the President’s nominee for Associate Justice of the Supreme Court of the United States, her husband Jesse and their children on Saturday, Sept. 26, 2020, in the Oval Office of the White House. Image source: Official White House Photo by Andrea Hanks.

Blaming people for their ill health is a strategy with an awful track record. It doesn’t do any good for the people subjected to “you’re too fat” messages. It doesn’t do any good for survivors of sexual assault or domestic violence. When directed inward, we self-blame for failing to do enough de-stressing self-care, rather than directing our blame to more appropriate targets like the needlessly bad working conditions or economic insecurities that make us stressed in the first place. Repeated messages that “sickness is the result of individual moral failure” also reinforce stigma. Stigma is a nasty phenomenon, with a “corrosive impact on the health of populations” and is particularly bad in cases of infectious diseases like COVID-19 because it actively encourages people to hide their infection, which is obviously bad for them and for others who interact with them.

A second problem with blaming people for their ill health is that ethics of blaming individual behavior reflects a misunderstanding of how health behavior works in the first place. Seemingly individualistic choices like diet, condom use, smoking, alcohol consumption, etc. are not made independently. We choose such things in roughly the same way we “choose” our religions or the languages we speak at home. Yes, each of us can choose to practice an entirely different religion (or lack thereof), and each of us can learn and use a different language in the home. Some of us do. In all of these cases, though, the vast majority of us don’t venture too far from a combination of what we learned while growing up and the cues we get from the people we interact with. We eat the foods familiar, convenient, and affordable to us. We adopt the values and beliefs (including trust in aspects of the scientific endeavor) of our communities, etc. Individual choices exist, but they exist within larger social contexts that have powerful but subtle effects on our choices.

Each of our everyday behaviors related to COVID-19 exist in a complex ecosystem of influences. Mask wearing and other social distancing measures have become intensely politicized and tied to masculinity. Masks and other health behavior measures also create new inconveniences and financial expenses. Social pressures also vary vastly from one setting to the next—in one store there are prodding questions and judgmental stares for wearing a mask, at an adjacent store there are similar pressures on those who don’t wear a mask. How we move our bodies and (un)cover our faces within these intense social pressures is not simply an individual choice.

Take the case of one of the attendees of the party at the White House, University of Notre Dame President, the Rev. John I. Jenkins. He did not wear a mask at the indoor/outdoor party, shook hands with attendees, and otherwise did not follow the standards he had imposed on members of his own university. He knew better and did not do better. Many of us have likely also gone against our better judgment to fit the incautious social distancing norms of a setting. Whether it is the university president or the university student, this is indeed hypocritical, and irresponsible in a sense. But, such blame is aside from the point, and more importantly it contributes to the sort of harmful cultural practices mentioned earlier—especially victim-blaming and stigmatizing the ill. Pointing out hypocrisy and the assigning of blame for individual health behavior distracts from the far more damaging thing Jenkins and the other leaders at the White House party did. As cultural leaders, they undercut efforts to build new norms, like public mask-wearing, the habit of greeting people without needlessly touching hands, etc.

We ought to blame Trump, Jenkins, and many other leaders who attended that party. We ought to blame them for failing in their relationships to the people they lead. That is a devastating form of irresponsibility. And it is very important to separate that kind of blame and irresponsibility accusation from the destructive form of blame discussed above: blaming people for having irresponsible relationships with their bodies/health.

The “personal responsibility” blame game has been the go-to talking point of conservative governors as they use their power to obstruct or dismantle public health measures. “You shouldn’t have to order somebody to do what is just in your own best interest and that of your family, friends and neighbors,” according to Alabama Governor Kay Ivey. Scolding people about “personal responsibility” during a public health crisis is a strategy based on how one wishes the world worked and not how it is actually working. Along similar lines, abstinence-only sex education doesn’t work (“teenagers: be sexually responsible by just not having sex before marriage!”), and neither does “just say no to drugs” education. Jenkins was at least right to point out that his behavior was a failure of leadership. As many of my colleagues in population health science say, we need to build a “culture of health.” That will require leaders suited to the task, and we ought to blame them when they fail in that leadership. Just skip the personal health blaming.

Sean Valles photo

Sean A. Valles, PhD, is an Associate Professor with an appointment in the Michigan State University Lyman Briggs College and the Department of Philosophy (where he is also Associate Chair). His research spans a range of topics in the philosophy of population health, from the use of evidence in medical genetics to the roles played by race concepts in epidemiology. He is author of the 2018 book Philosophy of Population Health: Philosophy for a New Public Health Era. He is also co-editor (with Quill R. Kukla) of the Oxford University Press book series “Bioethics for Social Justice.”

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, November 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. Valles: We Need Healthier Schools, and Student Activists Are Stepping Up; Recognizing Menstrual Supplies as Basic Health Necessities: The Bioethics of #FreePeriodsTrump’s Attempt to Reignite the Coal Industry Is Another Health Policy BlunderPolitics and the Other Lead Poisoning: The Public Health Ethics of Gun ViolenceClimate Change and Medical Risk

Continue reading “The White House outbreak: How to criticize irresponsible leaders without getting stuck in the illness blame game”

Does YouTube widen health literacy disparities?

Bioethics Public Seminar Series purple and teal icon

The 2020-2021 Bioethics Public Seminar Series (formerly the Bioethics Brownbag & Webinar Series) continues next month. You are invited to join us virtually – events will not take place in person. Our seminars are free to attend and open to all individuals.

Is Seeking Information on Social Media Harmful to Your Health?

Anjana Susarla photo
Anjana Susarla, PhD

Event Flyer
Zoom registration: bit.ly/bioethics-susarla

Studies of health literacy in the United States, such as the National Assessment of Adult Literacy conducted in 2003, estimated that only 12% of adults had proficient health literacy skills. This talk will examine how social media platforms such as YouTube widen such health literacy disparities by steering users toward questionable content. Extracting thousands of videos purporting to be about diabetes, I verified whether the information shown conforms to valid medical guidelines. Using methods from computer science called deep learning, I identify medical terms in these videos and then classify videos based on whether they encode a high or low degree of medical information. Using data from aggregate engagement with these videos, I discover that videos that are popular are less likely to contain validated medical information. A study on the most popular videos on COVID-19 likewise found that a quarter of videos did not contain medically valid information.

Nov 18 calendar icon

Join us for Dr. Susarla’s online lecture on Wednesday, November 18, 2020 from noon until 1 pm ET.

Anjana Susarla is a Professor of Information Systems at the Eli Broad College of Business. Her work has appeared in several academic journals and peer-reviewed conferences such as Academy of Management Conference, Information Systems Research, International Conference in Information Systems, Journal of Management Information Systems, Management Science and MIS Quarterly. Her op-eds and research have been quoted and published in several media outlets such as the Associated Press, Business Insider, Chicago Tribune, The Conversation, Fast Company, Houston Chronicle, Huffington Post, Michigan Public Radio, Marketplace Morning Report, Nasdaq, National Public Radio, Newsweek, Nieman Lab, the Nikkei, Pew Research, Quartz, Salon, the Week, Wired and the World Economic Forum.

Can’t make it? All webinars are recorded! Visit our archive of recorded lecturesTo receive reminders before each webinar, please subscribe to our mailing list.

Bioethics for Breakfast: Health Care Deserts: What is Happening in Rural America?

Bioethics for Breakfast Seminars in Medicine, Law and Society

Dr. Steve Barnett and Dr. Kelly Hirko presented at the October 8th Bioethics for Breakfast session, offering perspectives and insight on the topic “Health Care Deserts: What is Happening in Rural America?”

While past Bioethics for Breakfast events were held in person, this year’s series is taking place virtually. The series is generously sponsored by Hall, Render, Killian, Heath & Lyman.

The session focused on the challenges faced by rural health care. Rural populations tend to be older with more chronic health conditions, poorer, and uninsured or underinsured. Before the pandemic, rural hospitals were already stretched thin. A record 18 hospitals closed in 2019. Since then, another 14 have closed in the first half of 2020. Experts say that more would have closed if it weren’t for grants and loan money approved by Congress through the Cares Act. But now many hospitals have already gone through that relief money and are unsure how they will pay back federal loans, even as they are bracing for a possible increase in coronavirus cases over the winter. Of the 1,300 small critical care hospitals across the United States, 859 took advantage of Medicare loans.

What policy options are available for meeting these challenges? We want health care delivered efficiently, but we also want equitable access to needed health care. To what extent is equitable access threatened by hospital closures and difficulty recruiting young physicians?

Dr. Steve Barnett offered a hospital perspective, pointing out that many perceptions about rural America don’t necessarily reflect the truth. The majority of rural hospitals are designated as critical access hospitals. Physicians have been attracted to rural environments at a much lower rate than urban environments – this is a long-standing global problem. Dr. Barnett shared that physicians in rural America have misconceptions about the type of support they will receive from peers, about compensation, quality of care, and practice coverage. On a practical level, they also want to know where the nearest shopping mall is. On the subject of medical education, Dr. Barnett put forth two questions: How can we expose all medical students to rural communities? How can we admit students to medical school who have an interest in returning to their rural community? Regarding workforce shortages Dr. Barnett shared that the value of advanced practice nurses, nurse practitioners, and certified registered nurse anesthetists is being recognized.

Dr. Kelly Hirko then provided a patient perspective and offered potential policy considerations. Social determinants of health and health behaviors (like tobacco use) impact the rural patient population. The COVID-19 pandemic has rapidly hastened telehealth across the world. Using telehealth can be a tool to overcome access barriers and improve quality of rural health care. Dr. Hirko stressed the importance of broadband internet availability: limited availability in rural regions limits the uptake of telehealth. Dr. Hirko shared that more than one-third of rural Americans lack internet access in the home, with lower use of smartphones, computers, and tablets compared to urban populations. For these reasons, telehealth could contribute to unequal access to healthcare. Policy considerations she shared were to ensure availability and viability of rural healthcare facilities, and to maintain the healthcare workforce. Finally, Dr. Hirko discussed the need for efforts to improve rural health on a population level by increasing access to basic preventive services in order to address the root causes of poor outcomes in rural settings.

During the discussion portion, attendees offered questions related to telehealth barriers. While internet service may be available in a particular location, the cost of the service can still be a barrier to access. Wearable tech devices such as the Apple Watch, as well as other peripherals, have helped providers to get creative about measurements such as heart rate and blood pressure during telehealth visits.

Related Resources

About the Speakers

Steve Barnett, DHA, CRNA, FACHE
Dr. Steve Barnett has served as a hospital chief operating officer and chief executive officer over the past 20 years. Currently Steve is serving as the President & CEO of McKenzie Health System. McKenzie Health System is a rural critical access hospital in Sandusky, Michigan and one of the founding members of the National Rural Accountable Care Organization. Steve has been a member of the Michigan Health and Hospital Association since 2001, served and chaired their Legislative Policy Panel and sits on the Small & Rural Hospital Council. Steve earned a Doctorate in Healthcare Administration from Central Michigan University.

Kelly Hirko, PhD, MPH
Dr. Kelly Hirko is an Epidemiologist, and community-based researcher at the Michigan State University College of Human Medicine’s Traverse City campus. Her research focuses on cancer disparities and the role of lifestyle factors and social determinants in cancer prevention and control. She is particularly interested in using implementation science approaches to effectively incorporate evidence-based interventions into underserved rural settings. Dr. Hirko earned her PhD in Epidemiologic Sciences from the University of Michigan School of Public Health and completed a post-doctoral fellowship in Epidemiology at the Harvard T.H. Chan School of Public Health before joining MSU in 2016.

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.

A COVID-19 Vaccine Won’t Stop the Pandemic

Listen to this story
Bioethics in the News purple and teal icon

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

By Parker Crutchfield, PhD

As the COVID-19 pandemic continues to maim and kill thousands and devastate countless others, many are pinning their hopes of returning to a life resembling normal upon the development of a vaccine. The Centers for Disease Control and Prevention has even advised states and cities to be prepared to allocate up to 800 million doses of a vaccine in late October or early November. But it is highly unlikely that a vaccine will do much to stop the pandemic and related significant harm. For a vaccine to get us out of the pandemic, it needs to be developed, distributed, and received. Regardless of its development and distribution, if people don’t take it, then it won’t do any good. And there isn’t much reason to think that many people will take it, at least initially.

Image description: an illustration of a bottle with a white label that says “COVID-19 Vaccine” in black text. The bottle is different shades of blue with a dark blue background. Image source: Shafin Al Asad Protic/Pixabay.

Allocation Models

Recently, a team of scholars advocated for a scheme to allocate the eventual vaccine, the Fair Priority Model. This model, like most models of allocation, assumes that the vaccine will initially be scarce. On this assumption, the allocation then proceeds in phases, the first preventing the most significant harms such as death, the second preventing other serious harms and concomitant economic devastation, and the third addressing community transmission. Other models may set different priorities by, for example, putting health care workers or racial and ethnic minorities first in line.

Developing allocation models is important. But they all rest on a questionable assumption: that the people to whom the vaccine is allocated actually want it, or are at least willing to take it. Scarcity is just as much a matter of demand as it is a matter of supply.

Demand for a Vaccine

Recent evidence suggests that, generally, people won’t take the vaccine initially, even if offered. Almost 80% of people said they wouldn’t get it, if available, at least until others have done so, according to a recent CBS News poll. A return to something resembling normal life requires around 70-80% of the population to be immune.

Mistrust of the politicization of vaccine development or of the scientific practices involved may be responsible for much of the population’s apparent hesitation. But reasonable people may also simply not want to be first in line for a new immunity enhancer. Thus, whatever criteria are used, the allocation scheme must incorporate consideration of demand, not simply supply.

For example, the first allocation according to the Fair Priority Model should go to those people whose being vaccinated would most likely prevent death and who want the vaccine. If the vaccine is allocated to health care workers, the allocation must be to people who are health care workers and who want the vaccine. That is, demand for a vaccine should be just as much a component of allocation models as any other consideration.

Voluntary or Compulsory?

Allocation models must consider the population’s demand for a vaccine in order for such models to provide useful guidance on distribution. Given the apparent lack of demand, giving people the choice of whether to take the vaccine is unlikely to stop the pandemic any time soon. But demand only matters if people have an option. One way to avoid having to consider the population’s willingness to take the vaccine, and to dramatically decrease the time it takes to boost 70-80% of the population’s immunity, is to take that willingness out of the equation and make it compulsory.

Already some vaccinations are compulsory, depending on a person’s circumstances. Some have argued that the COVID-19 vaccine should be mandatory. One common principle in philosophy is that ought implies can. This means that what one’s moral obligations are hinges on what one can do. Even if one can justify compulsory COVID-19 vaccination, it’s unlikely that this is something that can be achieved. Compulsory vaccination is not something we can do, which means it’s not something we should do.

Consider, for example, the widespread reluctance to wear a mask and the flouting of social distancing guidelines. Wearing masks and social distancing are very minor burdens to bear for others’ well-being. While it is true that mask and social distancing mandates push against unrestrained permission to do what you want when you want to do it, others be damned, these intrusions are arguably minor (though are admittedly disruptive). Requiring 70-80% of the population to go someplace and get poked by a needle on multiple occasions or sprayed in the nose are much greater liberty intrusions. It is a pipe dream to think that a vaccine mandate would be accepted by the very same population who refuses to bear the more minor burdens of mask wearing and social distancing, which amounts to at least 29% of the population, enough to undermine our ability to stop the pandemic.

Different Baskets for Our Eggs

If administration of the COVID-19 vaccine is voluntary, not enough people will volunteer to get it. If administration is mandatory, still not enough people will get it. The vaccine’s allocation can only be either voluntary or mandatory. Either way, not enough people will get it, at least at first. The only conclusion to draw is that a vaccine is not going to stop the pandemic, at least any time soon. If ought implies can, we ought not pin our hopes upon a vaccine, because we cannot hope for it to work to stop the pandemic. There is no light at the end of the tunnel.

Image description: a narrow tunnel between two brick walls that leads to darkness. Image source: Peter H/Pixabay.

However, incentives and disincentives can change a person’s mind. Other than the incentive intrinsic to getting the vaccine—the preservation of human life and well-being—are there others that might make people more willing to get it, such as money or tax breaks? Or are there disincentives to vaccine refusal that might convince someone it is better to get it than it is to refuse? Carrots or sticks?

If neither, then we’re in for the long haul.

Parker Crutchfield photo

Parker 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, October 8, 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: Trust and Transparency in Quarantine; Public Health Crisis Warrants Liberty RestrictionsWe Should Tolerate and Regulate Clinical Use of Human Germline Editing

Click through to view references

How might lack of access impact maternity care options for rural women in Michigan?

Bioethics Public Seminar Series purple and teal icon

The Center for Ethics and Humanities in the Life Sciences is excited to announce the first event of the 2020-2021 Bioethics Public Seminar Series (formerly the Bioethics Brownbag & Webinar Series). You are invited to join us virtually – events will not take place in person. Our seminars are free to attend and open to all individuals.

Maternity Care Deserts in Rural Michigan

Andrea Wendling photo
Andrea Wendling, MD

Event Flyer
Zoom registration: bit.ly/bioethics-wendling

U.S. physician shortages affect rural healthcare access, including access to maternity care. OB deserts, which are geographical high-risk areas for care delivery, exist in the Upper Peninsula and northeast Lower Peninsula of Michigan. How might lack of access impact maternity care options for rural women in our state? Dr. Wendling will present recent work that identified and characterized access points for prenatal and delivery care in Michigan’s rural counties and explored access to Trial of Labor After Cesarean (TOLAC) services for rural Michigan women. We will discuss how lack of access may impact maternity care choices for rural women and will strategize ways to address this issue.

Sept 23 calendar icon

Join us for Dr. Wendling’s online lecture on Wednesday, September 23, 2020 from noon until 1 pm ET.

Andrea Wendling, MD, is a Professor of Family Medicine and Director of the Rural Medicine Curriculum for Michigan State University’s College of Human Medicine. She has received the Rural Professional of the Year Award from the Michigan Center for Rural Health and was named the Outstanding Educator of the Year by the National Rural Health Association in 2020. Dr. Wendling is Assistant Editor for the Family Medicine journal and a founding Associate Editor of Peer-Reviewed Reports in Medical Education and Research (PRIMER). She participates on rural workforce research groups for the National Rural Health Association (NRHA) and Association of American Medical Colleges (AAMC) and has presented and published in the areas of medical education and the rural health workforce. Dr. Wendling is a family physician in rural Northern Michigan.

Can’t make it? All webinars are recorded! Visit our archive of recorded lecturesTo receive reminders before each webinar, please subscribe to our mailing list.