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

Comments open through October 4

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 delivers keynote at Western Michigan University Medical Humanities conference

Devan Stahl photoThe Eighth Annual Western Michigan University Medical Humanities Conference was held September 13-14 in Kalamazoo, MI. Center Assistant Professor Dr. Devan Stahl and her sister Darian Goldin Stahl (dariangoldinstahl.com) delivered the keynote lecture on September 14, “Visualizing Chronic Illness in Medicine and the Arts.”

Based on their recently published book, Imaging and Imagining Illness, the presenters discussed the history of anatomical illustrations, the use of contemporary medical imaging technologies in the doctor-patient relationship, and how medical images affect persons living with chronic illness.

To hear more about this work from Darian and Dr. Stahl, listen to their episode of No Easy Answers in Bioethics, the Center’s podcast series: ‘Imaging and Imagining Illness’: Devan and Darian Stahl – Episode 7.

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Dr. Cabrera an expert panelist at international neurotechnology event

Center Assistant Professor Dr. Laura Cabrera was an invited expert panelist at the Organisation for Economic Co-operation and Development (OECD) workshop “Minding Neurotechnology: Delivering Responsible Innovation for Health and Well Being,” held September 6-7 in Shanghai, China.

The workshop was focused on exploring some of the unique ethical, legal, and policy challenges raised by health-related applications of brain science and its integration into cutting edge neurotechonologies. Dr. Cabrera’s session on “Identifying gaps in neurotechnology governance: potential roles of the market and the public sector to ensure ‘technology robustness’” was focused on raising potential governance issues associated with emerging neurotechnologies that deserve shared consideration given their public attention as well as their potential economic and social implications.

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Image description: Dr. Cabrera (third from right) is photographed on stage with fellow panelists at the OECD event. Photo by Dr. Judy Illes.

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Dr. Cabrera part of global neuroethics subcommittee

Laura Cabrera photoCenter Assistant Professor Dr. Laura Cabrera is one of the two International Neuroethics Society representatives who are a part of the IEEE BRAIN group. The IEEE Brain group is part of the IEEE (Institute of Electrical and Electronics Engineers), the world’s largest technical professional organization for the advancement of technology.

On August 31st, Dr. Cabrera joined the IEEE BRAIN Neuroethics subcommittee kick-off meeting at Georgetown University in Washington, D.C. This subcommittee includes philosophers, engineers, and neuroethicists, and it is tasked with putting together a document looking at ethical considerations for neurotechnologies.

For more information on Dr. Cabrera’s work in neuroethics, check out episode 5 of No Easy Answers in Bioethics, the Center’s podcast series: Public Perception of Psychiatric Interventions: Cabrera, Bluhm, and McKenzie.

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Why do psychiatrists choose not to disclose borderline personality disorder diagnoses with patients?

bbag-blog-image-logoTherapeutic Privilege in Psychiatry? The Case of Borderline Personality Disorder

Event Flyer

Borderline personality disorder (BPD) is a serious mental illness that effects 2-3% of the population, is highly stigmatized, and is often comorbid with other mental disorders. Although no pharmaceutical interventions exist, long-term psychotherapy has been shown to alleviate the symptoms of BPD. Nonetheless, behavioral health care professionals often hesitate to discuss BPD with their patients even when it is clear they have this disorder. Why do psychiatrists, in particular, fall silent? In this talk, Dr. Sisti will sketch the history of BPD and describe ethical arguments for and against of therapeutic nondisclosure. Dr. Sisti will summarize empirical data regarding psychiatrist nondisclosure of BPD, including recent research conducted by his team at Penn. Dr. Sisti will argue that diagnostic nondisclosure, while well-intentioned, can have long-term negative consequences for patients, caregivers, and the health system more generally. As a form of therapeutic privilege, nondisclosure of BPD is ethically inappropriate.

sept19-bbagJoin us for Dr. Sisti’s lecture on Wednesday, September 19, 2018 from noon until 1 pm in person or online.

Dominic Sisti, PhD is director of the Scattergood Program for the Applied Ethics of Behavioral Health Care and assistant professor in the Department of Medical Ethics & Health Policy at the University of Pennsylvania. He holds secondary appointments in the Department of Psychiatry, where he directs the ethics curriculum in the residency program, and in the Department of Philosophy. Dominic’s research examines the ethics of mental health care services and policies, including long-term psychiatric care for individuals with serious mental illness and ethical challenges in correctional mental health care. He also studies how mental disorders are defined, categorized, and diagnosed with a focus on personality disorders. Dr. Sisti’s writings have appeared in peer-reviewed journals such as JAMA, JAMA Psychiatry, Psychiatric Services, and the Journal of Medical Ethics. His work has been featured in popular media outlets such as the New York Times, NPR, Slate, and The Atlantic. Dr. Sisti received his PhD in Philosophy at Michigan State University, working under the supervision of Professor Tom Tomlinson. A native of Philadelphia, Dominic received his Master’s degree in bioethics from the University of Pennsylvania and his bachelor’s degree from Villanova University.

In person: This lecture will take place in C102 East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.

Online: Here are some instructions for your first time joining the webinar, or if you have attended or viewed them before, go to the meeting!

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.

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“Ask your doctor” – or just check Instagram?

This post is a part of our Bioethics in the News seriesBioethics in the News logo

By Robyn Bluhm, PhD

A couple of months ago, Kim Kardashian posted – and then quickly deleted – and then reposted – an Instagram advertisement promoting a morning sickness drug.

If this story sounds familiar, it may be because she did the same thing, for a different drug by the same manufacturer, in 2015. For the first post, the FDA issued a warning to the drug’s manufacturer, saying that the drug did not include information, e.g., about risks, required for pharmaceutical advertisements. Kardashian then posted a revised version that included the information missing in her initial post.

Direct-to-consumer (DTC) marketing of pharmaceuticals is not new. DTC marketing has been permitted in the U.S. by the FDA since the early 1980s, though it became much more common after 1997, when a number of restrictions on ad content were lifted. Since then, the use of these ads has greatly increased; in 2016 pharmaceutical companies spent $5.6 billion on ads, a 9% increase from the previous year.

Kim Kardashian Instagram post

Image description: Kim Kardashian’s Instagram post from June 20, 2018, showing a photograph of Kardashian holding a bottle of Bonjesta. Image source: @kimkardashian/Instagram.

Celebrity endorsements are also not new; they date back to the 18th century when Josiah Wedgwood used the patronage of the British royal family and other aristocrats to distinguish his china from competitors’. According to Megan Smith-Mady, one of the earliest uses of celebrity endorsement for pharmaceuticals had Mickey Mantel promoting an arthritis drug on TV talk shows. (YouTube actually shows him doing a commercial about athlete’s foot in 1976, though it’s best not to click on that link.) Smith-Mady also notes that the FDA responded quickly to this campaign, worried that viewers might not recognize that he was getting paid to promote the drug.

Since then, the relationship between celebrities and health care marketing has become more common – and more complicated. There have been many instances of celebrities appearing in commercials for medications (prescription or otherwise), and also of endorsing various medical devices and services related to health care.

Given all of this, Kardashian’s Instagram post is nothing new. Or is it? There is also reason to think that the use of social media in advertising for medical products may raise new ethical issues. For one thing, most countries do not permit DTC marketing of pharmaceuticals; in fact, Kardashian’s post includes a note saying that it is “for U.S. residents only.” Using social media is a way of getting around advertising bans.

Another thing to consider is the potential to target a younger market than can be reached with, for example, television or magazine ads. Not only do popular TV and film celebrities tend to have a strong social media presence and lots of followers, but celebrities whose fame is built entirely on social media platforms are becoming more common. One study found that respondents aged 13-24 were more likely to say that they would buy a brand or a product recommended by a YouTube star than by a traditional star. And while digital stars don’t (yet?) have the fame of “traditional” celebrities, top YouTube stars have Q scores (a rating of the familiarity and appeal of a celebrity) that are comparable to some traditional stars. Another study suggests that more children and teens consider social media celebrities to be role models more than they are influenced by musicians and actors.

Finally, I want to go back to the concern raised about Mickey Mantel’s talk show appearances – that it wasn’t clear that he was getting paid for his comments. In one sense, that worry now seems quaint; I think we are much more skeptical now about celebrity endorsements. And, in fact, some of Kardashian’s followers were less than impressed by her advertisement.

In another sense, though, new forms of online media do seem to complicate the relationships among information, marketing, medicine, and entertainment. Consider this: I first learned about the Instagram post via Bioethics.net, a site run by an academic bioethics journal. It linked to an article by Art Caplan, a well-known bioethicist (and one whose relationship with the media has been subject to attention). Caplan’s article appeared in LeapsMag, a new online publication focusing on news in the life sciences. On its “about” page, the publication hastens to describe itself as “an editorially-independent online magazine,” though you have to scroll down to find out that the reason it seems to be protesting its independence too much is that it was created by Bayer and is “the first magazine for mainstream readers created by a pharmaceutical company.”

But wait – there’s more. In looking online for information about Bayer and Leaps, I also found out that the company is currently feuding online with the makers of a new Netflix documentary, The Bleeding Edge. The movie documents problems in the medical device industry, and Bayer’s Essure contraceptive device is one of the central cases discussed (Bayer actually decided, for purely business reasons, to stop marketing the device the week before the documentary premiered. It’s worth noting, too, that Bayer released a “fact check” on the movie the day The Bleeding Edge premiered on Netflix, based on its April screening at a film festival.) And this feud is being covered by Variety, which started as a trade magazine for the entertainment industry, but now has a website and a Twitter following that vastly outstrips its print circulation.

What do I make of all this? I’m honestly not sure. I recognize that there are important differences between a documentary film and an Instagram post, even if both are reaching audiences through new online media. And I also recognize that there are arguments both for and against DTC marketing of pharmaceuticals. But it seems clear that the way that we get information about health and medicine is changing. Pharmaceutical companies are definitely paying attention to online media, so bioethicists should be, too.

Robyn Bluhm photoRobyn Bluhm, PhD, is an Associate Professor in the Department of Philosophy and Lyman Briggs College at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, September 6, 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. Bluhm: Antibiotics: No Clear CourseTo Floss or Not to Floss? That’s not the question

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Announcing the Fall 2018 Bioethics Brownbag & Webinar Series

bbag-icon-decThe Center for Ethics and Humanities in the Life Sciences at Michigan State University is proud to announce the 2018-2019 Bioethics Brownbag & Webinar Series, which features a variety of bioethics topics. The series will begin on September 19, 2018. You are invited to join us in person or watch live online from anywhere in the world! Information about the fall series is listed below. Please visit our website for more details, including the full description and speaker bio for each event.

Fall 2018 Series Flyer

sept19-bbagTherapeutic Privilege in Psychiatry? The Case of Borderline Personality Disorder
Why do behavioral health care professionals often hesitate to discuss BPD with their patients even when it is clear they have this disorder?
Wednesday, September 19, 2018; C102 Patenge Room, East Fee Hall
Dominic A. Sisti, PhD, is Director, The Scattergood Program for Applied Ethics of Behavioral Health Care; Assistant Professor, Department of Medical Ethics & Health Policy; Assistant Professor, Department of Psychiatry, Perelman School of Medicine at the University of Pennsylvania.

oct-10-bbagEnding Medical Self-Regulation: Does Less Physician Control Improve Patient Safety and Protect Patient Rights?
Wednesday, October 10, 2018; E4 Fee Hall
Thaddeus Mason Pope, JD, PhD, is Director of the Health Law Institute at Mitchell Hamline School of Law.

In person: These lectures will take place from 12:00-1:00 PM (Eastern Time) in East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.

Online: Here are some instructions for your first time joining the webinar, or if you have attended or viewed them before, go to the meeting!

Can’t make it? Every lecture is recorded and posted for viewing in our archive. If you’d like to receive a reminder before each lecture, please subscribe to our mailing list.

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