What do LGBTQ patients want from their healthcare providers?

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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

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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.

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

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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.

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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.

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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.

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Brews and Views events pivot to online format

Brews and Views icon green and purple As members of the MSU community continue to work remotely and practice social distancing, Brews and Views has pivoted to online-only “at home editions” of the series that addresses the implications and ethical considerations of biomedical innovations and topics at the forefront of scientific investigation.

The first Brews and Views: At Home Edition was held on March 20 on the topic “Novel Coronavirus Pushes our Limits— We Need to Push Back, Thoughtfully and Fast.” Discussants were Brett Etchebarne, MD, PhD (College of Osteopathic Medicine), Leonard Fleck, PhD (College of Human Medicine), Maria Lapinski, PhD (College of Communication Arts and Sciences and College of Agriculture & Natural Resources), and Richard Lenski, PhD (College of Natural Science). Dr. Chris Contag, Director of the Institute for Quantitative Health Science & Engineering (IQ) and Chair of the Department of Biomedical Engineering, served as moderator.

The group of experts addressed scientific, communication, medical, societal, and ethical challenges presented by the novel coronavirus called SARS-CoV-2 that causes COVID-19 disease. Their goal was to inform and help those in the audience as we all navigate this global crisis. A recording of the event is available to watch on the IQ website.

On April 17, a second “at home edition” event took place, titled “COVID-19 and Our Children: Worry Now or Worry Later?” Moderators Dr. Chris Contag and Dr. Keith English, Professor and Chair of the Department of Pediatrics and Human Development, were joined by discussants from across the university: Carrie Shrier (MSU Extension), Kendal Holtrop, PhD (College of Social Science), Dawn Misra, MHS, PhD (College of Human Medicine), and Amy Nuttall, PhD (College of Social Science and C-RAIND).

Given the various ways that the current pandemic will impact children, they considered several questions: How will social distancing impact children? How can we use online learning to facilitate education? How can we prepare for the next epidemic? How do we deal with the direct and indirect effects and the social sequelae of this pandemic? How do we effectively communicate information to our children without increasing or generating fear?

To receive notice of future Brews and Views events, subscribe to IQ’s email newsletter. The next Brews and Views: At Home Edition is scheduled for Friday, May 29 from 5:00-7:00 pm on “The Dollars and Sense of Economic Convalescence from COVID-19.” The discussion will feature members of the local business community as well as Sanjay Gupta, PhD, Dean of the Eli Broad College of Business. Registration for the online event is open.

Brews and Views is presented collaboratively by the Center for Ethics and Humanities in the Life Sciences and the Institute for Quantitative Health Science & Engineering at Michigan State University.

We Need Healthier Schools, and Student Activists Are Stepping Up

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

By Sean A. Valles, PhD

California just passed two laws that advance health in schools in ways that might not seem intuitive: pushing middle school and high school start times to after 8am, and banning school districts from “lunch shaming” that treats students differently based on whether they have unpaid school lunch debt. These laws are part of a collection of diverse efforts to make U.S. schools healthier places. The fact that some of these efforts have been led by students themselves is especially heartening.

Bioethics of school policies
The two new laws in California are worthy of attention in a bioethics blog because U.S. schools are, for many students and in many ways, unhealthy places. Not simply because they are crowded spaces infamous for spreading coughs and colds (and stress). For many students, they are also places of food insecurity, social stigma, or even fear of violence. Those problems also shed light on larger problems in society. Even as a child in Los Angeles, I grasped that the local high school having a metal detector at the door signified that something much bigger had gone horribly wrong in my community. Most student problems have their roots outside the school walls, but we can at least do our best to design schools to contend with the difficult realities of young people’s lives.

There is now compelling evidence that later start times for schools are better for adolescent health than early morning ones. As pointed out in one review of the research, adolescents’ bedtimes seem to be more or less independent of when school starts in the morning, partly due to biological clock rhythms changing during puberty. Students forced to begin school early in the morning suffer all of the resulting harms of insufficient sleep (most readers are surely aware that insufficient sleep is bad for physical and mental well-being). This change is surprising in part because the American Academy of Pediatrics has, with limited success until now, been pushing for later school start times, insisting that school start times should facilitate the 8.5-9.5 hours of sleep appropriate for adolescent biology. It will be a difficult schedule transition for some California schools and families/guardians to adjust to, but the health rationale remains powerful.

Stigmatizing and manipulating students are problems, not solutions
It is also encouraging to see California legislate against lunch shaming. Unless prohibited, U.S. schools have the freedom to intentionally or incidentally shame students for being unable to afford their lunch meals. They have done so by giving indebted students inferior meals, marking the students with wristbands or stamps, etc. This is a serious health matter because imposing a stigmatized status upon a child, or even just amplifying an existing one, is a harmful act. Research is quite clear that stigma (“the co-occurrence of labeling, stereotyping, separation, status loss, and discrimination in a context in which power is exercised”) is a powerful and pervasive cause of health injustices. Stigma stresses bodies, socially controls people, and excludes them from social opportunities and resources available to others. Being a child without enough money to pay for lunch is quite hard enough, without one’s school officials metaphorically painting a target on one’s back.

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Image description: Young person at the March for Our Lives protest, holding a placard painted with the words “AM I NEXT?” in red. Image source: Roger Jones/Public Domain.

The desirability of the California law gets clearer when one looks at a policy that goes in the opposite direction. In a widely-criticized lurch backwards, a newly-created policy in a New Jersey school district gives discretion to principals to ban students with lunch debt from participating in extracurricular activities. Which students? Under which circumstances? What goals are achieved by such exclusions? Certainly banning students from soccer practice or chess club doesn’t make money magically appear in their parents’ pockets. The policy is a setback, but I am encouraged by the backlash that gives a new sense of clarity to how remarkably regressive this policy is in light of the opposite trend.

Student advocacy should be welcomed
Most encouraging to me is the fact that students are advocating for themselves and the health of their schools. I am glad that the American Academy of Pediatrics and some California state legislators are advocating for healthier schools, but I have argued at length elsewhere that it is preferable to empower people advocate for themselves. And so students are. For instance, they have been at the forefront of a series of lobbying efforts (successful in Oregon and Utah) to get mental sick days recognized as legitimate reasons for missing school.

It is no coincidence that this push to create space for “mental health days” comes in the middle of a period of worsening mental health of young people in the U.S. Deaths from suicides just replaced deaths from homicides as the second leading cause of death among 15-19-year-olds (deaths from traffic accidents are down, but still exceed both). And homicides are also a target of student activism; after the Parkland school shooting, young people became the unexpected leaders of a new wave of gun control activism.

The late 2010s have been a time of disorienting rapid change, but I suspect that future historians will highlight one global social phenomenon: young people demanding a better world. The most prominent example is the rise of young climate change activists around the world—Greta Thunberg being the most famous—demanding action with a new sense of clarity and resolve. As I write this, Teen Vogue’s website teases an article with a link saying “Why Homeless Advocates Aren’t Happy With the 2020 Presidential Candidates” and an op-ed on radical labor organizing among nail salon workers.

Better health through better spaces
Even though lunch shaming, poor mental health, exhaustion and all sorts of other health problems still tragically afflict young people in schools, I am optimistic because it really does feel that the winds have shifted—thanks in large part to student activists, unhealthy schools are finally getting reforms they have long needed. As I argue at length in the book Philosophy of Population Health, health depends not just on whether we have good medical care, but also on whether the places where we live our everyday lives have been thoughtfully designed to support good health.

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Sean A. Valles, PhD, is an Associate Professor with an appointment in Lyman Briggs College and the Department of Philosophy at Michigan State University. 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 Director of the MSU Science and Society @ State Program, supporting interdisciplinary faculty collaborations that join the humanities, arts, and sciences.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, November 28, 2019. 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: 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 Violence; Climate Change and Medical Risk

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Dr. Fleck facilitates ethics workshop at Michigan pediatrics conference

Leonard Fleck photoOn September 14, Center Professor and Acting Director Dr. Leonard Fleck and Dr. Kenneth Pituch, MD, ran an ethics workshop at the Michigan Chapter of the American Academy of Pediatrics (MIAAP) 68th Annual Conference. The workshop, “Ethical Challenges in the Care of Seriously Ill Children,” focused on two cases: a growth attenuation case, and a Trisomy-18 newborn case.

The growth attenuation case involved a 7-year-old boy with severe developmental delay related to a CMV infection in utero. Parents are middle-aged and “not in great health.” They requested growth attenuation hormone therapy so that they would be able to manage the care of their child for many more years. No one doubts that they are devoted parents. The relevant ethical considerations concerned the best interests of this child and parental rights to make medical decisions for their children. On the face of it, it looks like the parents are making this decision for their benefit, i.e., easier care management for this child. While this is true, as the discussion brought out, it is also the case that this would be in the best interest of the child as well. More specifically, this child will not be deprived of any life experiences as a result of growth attenuation because of his severe developmental delay. Hence, growth attenuation does not represent a harm to this child.

Dr. Fleck and Dr. Pituch’s other case involved a Trisomy-18 newborn. In the past these children had dismal prospects. Virtually all of them died before age one, most often because of cardiac anomalies. Today, complex surgeries can be done on these children, all of which are risky. Consequently, some of these children can survive into their twenties, though this will be with severe cognitive deficiencies. The ethical challenge for pediatricians is determining what sort of conversation to have with parents regarding treatment or non-treatment options. In the case discussed, this was complicated by the fact that a representative of a Trisomy-18 support group contacted these parents one day after the birth to “assure” them that they did not have to choose non-treatment. The problem with these support groups is that they tend to be excessively optimistic and do not know the medically relevant and ethically relevant details associated with prospects for a particular infant. This can complicate the conversation that a pediatrician must have with these parents, and can potentially sow the seeds of distrust. What would clearly be the ethically and practically wrong thing to do would be to tell these parents to pay no attention to these support groups. Overall, the discussion in this workshop was lively and thoughtful.

Making Martyrs of Our Children: Religious Exemptions in Child Abuse and Neglect Cases

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

By Devan Stahl, PhD

On August 2, 2018, Seth Welch called 911 after finding his 10-month-old daughter, Mary Anne Welch, unresponsive in her crib. Mary was pronounced dead at the scene and the medical examiner determined Mary’s death was the result of malnutrition and dehydration. During interviews, Seth Welch and his wife Tatiana Fusari admitted they were aware of Mary’s skinny appearance for at least a month prior to her death, but claimed that they had fed her appropriately and did not believe her to be ill. The parents are now awaiting trial for felony murder and first-degree child abuse.

The case has made national headlines, because the parents claim their decision not to take Mary to a doctor was based, in part, on their religious beliefs. Mrs. Fusari said she failed to reach out for medical help for her daughter because she feared having her children removed by Child Protective Services, a lack of faith in the medical system, and “religious reasons.” Further, Mr. Welch claims he is being unfairly charged in Mary’s death because of his “very strong faith.” Neither Mr. Welch nor Mrs. Fusari have explained their religious beliefs, but in Facebook videos, Mr. Welch claims he is “not opposed to medicine or doctors,” but he believes some doctors are part of a “priesthood of the medical cult.” He also claims not to believe in vaccines, and expressed a desire to live in a “commune of Christian disciples living off the grid somewhere.” The reasons Mary’s parents did not take her to see a physician appear to be multifaceted, but their claims to religious liberty are a hot button issue in bioethics and politics today.

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Image description: a baby is photographed lying down, a hand is holding a stethoscope to the baby’s chest. Image source: Bread for the World/Flickr Creative Commons

The case of Mary Anne Welch is yet another in a long line of child neglect and abuse cases where a religious exemption defense is likely to be mounted. All U.S. states have laws prohibiting child abuse and neglect, but 39 states also have laws protecting parents from abuse and neglect charges (though not murder charges) when they fail to provide medical assistance to their children because of their religious beliefs. Religious exemption laws are meant to protect the religious liberty of individuals who use faith-based practices in place of medical science; although in many states the religious exemption only applies to people who are part of “recognized” religious denominations. These exemptions grew out of a Department of Health, Education, and Welfare (HEW) ruling after the 1974 passage of the Child Abuse Prevention and Treatment Act, which specified that religious exemptions be added to states’ child protection laws. In 1983, HEW adopted new regulations that removed the requirement for religious exemption, however, few states have repealed their religious exemption laws. In many states with exemptions, including Michigan where Mr. Welch and Mrs. Fusari reside, courts can order medical services to be provided to a child whose health or life are at risk without medical care.

In nearly all cases, competent adults are free to make medical decisions according to their religious beliefs, and cannot have treatment forced on them for any reason. At the same time, parents have certain obligations toward their children, which restrict their right to exercise their religious beliefs on behalf of their children. In the famous U.S. Supreme Court case Prince v. Massachusetts (1944), the court ruled that “Parents may be free to become martyrs themselves,” but they are not free “to make martyrs of their children before they have reached the age of full and legal discretion when they can make that choice for themselves.”

The case of Mary Anne Welch is a microcosm of a larger debate happening in health care around religious liberty and the rights of children. The American Academy of Pediatrics (AAP) has stated that parental desires regarding their child’s medical treatment should be followed, unless these decisions clearly go against the child’s best interests. At the same time, for decades the AAP has been opposed to religious exemption laws. In cases where parents are acting maliciously or with gross indifference to the well-being of their child, it is easy to see why overriding parental decision-making would be appropriate. Prosecuting parents for neglect and abuse if their child suffers as a result of their decisions feels appropriate as well. Knowing very little about Mr. Welch and Mrs. Fusari, however, it would be presumptuous to make any judgments about their fitness as parents, or about their care for Mary. At this point it is not clear that given Mary’s weight loss, other reasonable parents in a comparable situation would have taken their child to the doctor regardless of their religious beliefs. Time will tell if Mary’s death should have been foreseeable or if it would have been preventable with proper medical care.

What is likely to happen in the meantime, and seems to be happening already in the media, is that Mr. Welch and Mrs. Fusari’s religious beliefs will be scrutinized. (Their concerns about the dangers of hospitalization are supported by recent studies about medical errors.) Religious exemption laws regarding parental neglect are controversial, and critics are right to question the legitimacy of such laws when children die as a result of their parent’s religious beliefs. Despite their religious beliefs, we ought to hold parents to a standard where they are expected to prevent injuries to their children. At the same time, we ought not to hold parents such as Mr. Welch to a higher standard for parental care, simply because he has particular religious beliefs that are not widely held by other parents. Plenty of parents choose to opt out of certain medical treatments for religious and non-religious reasons alike, and it is not clear that medical orthodoxy should always be determinative of a child’s best interest. Time will tell if other prudent parents would have taken a child in Mary’s condition to the doctor. If that is found to be the case, then Mary’s parents should be held accountable for their decisions.

Devan Stahl photoDevan Stahl, PhD, is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Pediatrics and Human Development in the Michigan State University College of Human Medicine.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, October 4, 2018. 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. Stahl: Mass Shootings, Mental Illness and StigmaDisability and the Decisional Capacity to Vote

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Dr. Stahl gives talk at neonatal nurses conference

Devan Stahl photoOn April 30, Center Assistant Professor Dr. Devan Stahl gave a plenary address at the State of Wisconsin Association of Neonatal Nurses Annual Education Conference, titled “Palliative Care and End of Life Ethics in the NICU.” Using case studies, she discussed the ethical and medical complexities surrounding decisions for the treatment of severely ill infants, strategies for interacting with families who request inappropriate or non-beneficial treatment for their child, and the obligations of care providers to protect the best interests of infants. 150 nurses from Wisconsin and surrounding states were in attendance.

Caring for Infants with Trisomy 18: Practical and Ethical Challenges

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Image: Dr. Devan Stahl poses for a photo in front of the conference schedule. Photo courtesy of Dr. Stahl.

Center Assistant Professor Dr. Devan Stahl recently traveled to Rhode Island to present at the National Association of Neonatal Nurses’ (NANN) Advanced Practice Summit, held on October 11. Dr. Stahl delivered the event’s keynote address, speaking on “Caring for Infants with Trisomy 18: Practical and Ethical Challenges.”

Dr. Stahl’s presentation discussed how to make difficult choices about what treatments should be offered to parents, what choices should be offered by the health care team, and how best to support parents in the decision making process. The presentation was well attended and generated much discussion as the group worked through the various ethical challenges presented.

Just Caring: Health Reform, Cost Control, and the Fate of Children with Life-Altering Illnesses

Leonard Fleck photoCenter Professor Dr. Leonard Fleck recently gave a keynote address at the 2017 Pediatric Bioethics Day at Norton Children’s Hospital in Louisville, KY, held on September 20.

Titled “Just Caring: Health Reform, Cost Control, and the Fate of Children with Life-Altering Illnesses,” Dr. Fleck’s talk started out with a short string of cases related to children with life-altering illnesses. He brought up the Jimmy Kimmel case (recently born infant with hypoplastic left heart syndrome), in part because a very explicit connection was made with the House-approved repeal of the Affordable Care Act (ACA). He also brought up childhood cancer cases, some capable of being effectively addressed by contemporary medicine, others not capable of being effectively addressed but raising ethics issues related to cost/health care justice as well as unnecessary harms related to aggressive treatment.

Dr. Fleck painted a statistical picture of the very large problem of escalating health care costs in the U.S., primarily as background for better understanding the “big picture” behind the problem of health care justice. He introduced seven different conceptions of justice, which are all part of our everyday understanding of how resources ought to be distributed fairly. The basic question we are seeking to answer would be this: What are the just claims to limited health care resources for children who have a broad range of expensive health care needs, the outcomes of which might vary considerably and have significant uncertainty attached to them?

Dr. Fleck reviewed a few elements of the ACA that were directly relevant to the fate of children with life-altering illnesses. For example, what effect has Medicaid expansion had on these children in the different states? Or what effect has the pre-existing condition clause of the ACA had on children with life-altering illnesses (forbidding insurance companies from discriminating against such children, either as children or future possible adults)?

Dr. Fleck then critically examined the American Health Care Act as passed in the House, and then the Senate counterpart of that bill. He addressed what he saw as the key injustices in those bills, the biggest being that it would achieve cost control largely through practices that were forms of invisible rationing (something he has written about extensively). Likewise, Dr. Fleck assessed the implications of the contraction of Medicaid for children with life-altering illnesses. This included the corruption of protections for pre-existing conditions and the inadequacy of state-based “high risk” pools allegedly as adequate protection of the health care rights and needs of such children.

Finally, Dr. Fleck discussed precision medicine in relation to cancer in children, keeping in mind the very high cost of these targeted therapies and the limited (marginal) success that has largely been true, especially in relation to solid cancers. There has been a lot of half-truths and hyperbole in this regard. There are in fact many extremely costly drugs for children with a range of life-threatening problems: some very effective, some not. Dr. Fleck used examples such as hemophilia (especially Factor VIII resistant), Gaucher, cystic fibrosis, Pompe, Fabry, Duchenne, etc. In this connection Dr. Fleck wanted to tease out the ethical challenges: If we cannot afford or justify doing EVERYTHING medically possible for all these children, then how should priorities be justifiably set? What should be the role of rational democratic deliberation in addressing these justice-relevant issues? Is bedside rationing ever morally justifiable in these circumstances? If so, how would we distinguish just bedside rationing from unjust bedside rationing decisions?

Bioethics for Breakfast: Charlie Gard and Solomon’s Dilemma: What are the limits of parental medical decision making?

Bioethics for Breakfast Seminars in Medicine, Law and SocietyHonorable Laura Baird, JD, and Marleen Eijkholt, JD, PhD, presented at the Bioethics for Breakfast event on September 28, 2017, offering perspective and insight on the topic, “Charlie Gard and Solomon’s Dilemma: What are the limits of parental medical decision making?”

Charlie Gard’s tragic life and death came to light in a UK case that garnered considerable worldwide media attention in July. To recall the basic medical details of the case, Charlie Gard suffered from an extremely rare mitochondrial DNA depletion syndrome (infantile onset encephalomyopathy). This results in a gradual weakening of all the muscles in the body, including the lungs, which is why Charlie had his life sustained by a ventilator since October of 2016 (he had been born in early August). In addition, he suffered multiple seizures in late 2016, which resulted in brain damage. In early March of 2017, Charlie’s doctors recommended the removal of life-support and that he be allowed to die. In their judgment nothing more could be done in Charlie’s best interest, as his brain and muscle damage were irreversible. His parents rejected the hospital’s recommendations. The parents had located Dr. Hirano at Columbia University, after surfing the web in late 2016, whose primary area of research was mitochondrial depletion syndrome. Dr. Hirano was prepared to offer an experimental treatment called nucleoside therapy, which had yielded some marginal benefit for children with a condition similar—but not genetically identical—to Charlie’s condition. Given Charlie’s massive brain damage, it was unclear whether he could feel any pain. What were Charlie’s best interests? Was that a judgment that only parents had an ultimate right to make? And what are the ethical obligations of physicians in cases such as this?

The discussion started with this case, but other cases were introduced that raised similar issues.

Honorable Laura Baird, JD
Judge, Ingham County Circuit Court
Laura Baird is an Ingham County Circuit Court Judge serving in the Family Division, where they decide child custody as well as related domestic issues, abuse and neglect, delinquency, paternity, name changes, guardianships, and parental consent waivers. Much of her professional life has been devoted to children and their families and trying to find the best outcomes for them. Prior to joining the Ingham County Circuit Court in 2001, Judge Baird served as a State Representative from 1995-2000 and participated in the enactment of the Family Court Act. Judge Baird and her husband are parents of three children; their middle child was injured at birth and rendered severely disabled, which caused them to experience many interfaces with pediatric medical care.

Marleen Eijkholt, JD, PhD
Assistant Professor, Center for Ethics and Humanities in the Life Sciences and Department of Obstetrics, Gynecology and Reproductive Biology, Michigan State University College of Human Medicine
Clinical Ethics Consultant, Spectrum Health System
Marleen Eijkholt focuses on a wide range of Ethical, Legal and Social Implications (ELSI) in health care ethics, including neurotechnology, reproductive medicine, clinical medicine and clinical research. Her work is eclectic like her background, including projects on stem cell research for spinal cord injury, deep brain stimulation, experimental treatments, placebos, and reproductive rights. She combines ethical, legal and philosophical theories in her research and scholarship. Additionally, she engages these in her professional life as an ethics consultant at Spectrum Health System. Marleen also contributes her expertise to the College of Human Medicine’s Shared Discovery Curriculum.

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.

Pseudoscience and Measles in Minnesota

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

By Hannah C. Giunta, DO, PhD, MPH

A recent measles outbreak in the Minneapolis-St. Paul, MN metro area is all over the news. More than thirty children have been treated at local hospitals, and at least 50 measles cases have been confirmed. The local Somali immigrant community has been hardest hit in large part due to their low vaccination rates. Commentators have demanded a variety of measures to control the vaccine-preventable disease, including enhanced border security. However, there has been less coverage of the outbreak as evidence of systemic social injustice.

Indeed, no matter what ones views are on compulsory vaccination, Somali parents’ vaccine refusal is not a case of informed, empowered parental choice but one of disadvantage and exploitation. The Somali immigrant community has been targeted by anti-vaccine activists spreading scientifically suspect information. Activists have taken advantage of an as yet unexplained increased rate of severe autism (but not autism in general) in the Somali community, encouraging parents not to vaccinate while spreading long debunked claims about the link between vaccination and autism. Realizing that internet rumors were not effective, activists have taken to personally visiting families and warning them about the dangers of vaccination. Yet, there is a real temptation to place some of the blame for the epidemic on Somali parents. Even commentators who rightly place blame on the anti-vaccine activists and declare the situation quite literally “a natural experiment” do not take the extra step of calling activists what they really are: gamblers and fraudulent pseudo-scientists willing to bet on the lives of disadvantaged children. This is not a case about free speech or poor parental decision-making; rather, it is a case of advocates conducting a so-called “natural” experiment where they stand to possibly gain the benefits (i.e. possible support for their cause) without taking on or acknowledging any of the risks faced by their subject-victims. The activists are guilty not just of being ill-informed and having dubious goals but also of perpetrating a larger social injustice.

While people certainly have the right to free speech and we all have a responsibility to evaluate the information presented to us, anti-vaccine advocates in this case chose to target a vulnerable population and to take advantage of individuals’ lack of empowerment. Of course, they did not set out to conduct a classic scientific experiment, but they are certainly still guilty of participating in a type of experiment. Some might say that the activists were just trying to help Somali families because they sincerely believe in a link between autism and vaccination. Others would argue that these individuals are not qualified scientists and were not performing research. But, the activists’ project was more devious than misinformation. The activists sought to target a minority community, take advantage of a medical puzzle, keep community members in the dark about their true objectives, and to recruit participants into a risky gamble where “benefits” primarily accrue to the activists themselves. After all, if the activists could point to any decline in the autism rate (regardless of causation) or show the public that vaccine-preventable infections are simple childhood illnesses from which children recover without incident, they would have more “data” to support their cause. The very fact that parents believed the activists likely lent more credibility to the anti-vaccine crusade in populist minds. If enough people believe the message, surely there must be something to it?

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Image description: a baby is in the hospital with measles in the Philippines. Image source: CDC Global/Flickr Creative Commons

The social injustice implications of a pseudo-research paradigm come into focus when we consider three major aspects of the case in question. First, the activists exploited their own relative privilege by providing biased information. There is no way that individuals engaged with the anti-vaccine campaign are unaware of vaccine-preventable diseases and the risks they present. They simply choose not to focus on those risks. They so strongly support their own hypothesis that they believe it to be true despite evidence to the contrary, much like a researcher might believe that nothing could possibly go wrong in an experiment. Anti-vaccine activists usually have access to many sources of information and thereby a certain degree of epistemic privilege. They have socioeconomic resources to travel to ethnic enclaves and meet with Somali families. On the other hand, the Somali community in Minnesota continues to struggle with poverty, unemployment, and related social ills. Somali children are already at-risk for poorer health outcomes, but the activists did not consider this relative health disadvantage.

Secondly, the activists maximized their own benefits while placing all of the burdens on the Somali children. The segregation of poor Somali immigrants into certain ethnic enclaves virtually insures that children, including the activists’ children, outside these neighborhoods face much less risk of illness. Should there be a serious outbreak, Somali children would bear the burden, not the activists’ children. The Somali community would also be blamed for not vaccinating their children, absolving the activists’ of responsibility through a leveraging of their privileged social position.

Lastly, even with obvious evidence that the Somali community is suffering a measles outbreak, activists have failed to reach out and attempt to retract their message. Their pseudoscientific project continues unabated. They cloak themselves in the language of science while allowing a natural experiment to run wild and harm innocent children. Clearly, they believe their agenda and hypothesis about autism causation are more important than the lives of innocent children. Measles does kill, and over 30% of children will experience one or more complications, including diarrhea and dehydration, pneumonia, and encephalitis. Perhaps, if anti-vaccine crusaders wish to engage in pseudoscience, we should hold them to the standards and responsibilities of real medical scientists, including the wrongful death of any children who succumb and the continuing expense of measles-related complications. You can’t yell “fire” in a crowded room if there really isn’t a fire, and activists have crossed a line and are doing just that. We, in the name of equitable health outcomes, need to remind activists that words do matter and their experiment has failed.

hannah-giunta-2017-cropHannah C. Giunta is a May 2017 graduate of the Michigan State University DO-PhD program. She received her MPH in May 2015 and her philosophy PhD in May 2016. Dr. Giunta is an incoming Mayo Clinic Pediatrics Resident.

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