The 2022-2023 Bioethics Public Seminar Series continues next month with a webinar from Center Assistant Professor Michelle T. Pham, PhD, on “Clinician Perspectives on the Potential of DBS for Pediatric Patients with Treatment-Resistant OCD.” This virtual event is free to attend and open to all individuals.
Wednesday, February 15, 2023 1:30-2:30 PM EST (UTC−05:00) Zoom webinar registration: bit.ly/bioethics-pham
The World Society for Stereotactic and Functional Neurosurgery has argued that at least two successful randomized controlled trials should be available before deep brain stimulation (DBS) treatment for a psychiatric disorder is considered “established.” DBS is currently offered to children ages 7 and older with refractory dystonia under an FDA-humanitarian device exemption. No randomized control trials were conducted – practitioners relied on evidence from DBS use in adults. In addition, accumulated research supports the safety and effectiveness of DBS for obsessive-compulsive disorder (OCD) in adults (Wu et al. 2021).
Approximately 10-20% of children with OCD have treatment-resistant presentations, so it is likely that there will be interest in offering DBS for some children (POTS 2004). Both ethical and empirical anticipatory work is needed to evaluate whether, and if so, under what conditions it might be appropriate to offer DBS in this context. This seminar will present qualitative data from semi-structured interviews with 24 clinicians with expertise in this area regarding: (a) acceptable levels of evidence to offer DBS in this patient population and (b) institutional policies or protocols needed to effectively provide care for them.
Michelle T. Pham is an assistant professor in the Center for Bioethics and Social Justice and the Department of Medicine in the Michigan State University College of Human Medicine. She conducts research in the interdisciplinary field of Neuroethics and connected issues in the Philosophy of Science. Some recent topics include promoting post-trial care for patient-participants in experimental brain implant studies and decision-making in the context of pediatric deep brain stimulation. Pham also researches ways to promote engagement with patient-participants who contribute to neuroscience and neurotechnology research; and she has raised the concern that patient-participants in these brain implant studies may be exploited.
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
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.
Join us for this online lecture on Wednesday, January 27, 2021 from noon until 1 pm ET.
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.
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.
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.
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.
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.
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.
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.
On 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.
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.
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, 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.
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On 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.
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.
Center 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?
Honorable 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.
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.
This post is a part of our 
On September 14, Center Professor and Acting Director 
Honorable 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?”
MSU Bioethics 