Visit The Neuroethics Blog, hosted by the Center for Ethics, Neuroethics Program at Emory University, to read “Global Neuroethics and Cultural Diversity: Some Challenges to Consider.” The piece was written by Karen Herrera-Ferrá, founder of the Mexican Association of Neuroethics, Arleen Salles, Senior Researcher at the Centre for Research Ethics and Bioethics at Uppsala University in Sweden, and Laura Cabrera, Assistant Professor at the Michigan State University Center for Ethics and Humanities in the Life Sciences.
Category: Friends of the Center
“Where does responsibility lie if a person acts under the influence of their brain implant?”
Visit The Conversation to read “It’s not my fault, my brain implant made me do it,” a collaborative article from Center Assistant Professor Dr. Laura Cabrera and College of Law Associate Professor Dr. Jennifer Carter-Johnson. They combine their neuroethics and legal expertise to address questions such as: “Where does responsibility lie if a person acts under the influence of their brain implant?” The article was also published in Scientific American.
In November 2017, Drs. Cabrera and Carter-Johnson participated in a Brews and Views event of the same name, “It’s not my fault: my brain implant made me do it.” Brews and Views events, moderated discussions addressing the most fascinating and provocative areas of bioscience and engineering, are a collaboration between the Institute for Quantitative Health Science and Engineering and the Center for Ethics and Humanities in the Life Sciences at Michigan State University.
Bioethics in the News from Laura Cabrera:
Bioethics in the News from Jennifer Carter-Johnson:
Bioethics for Breakfast: Medicaid Work Requirements: Blood, Sweat and Tears Too?
Adrianne Haggins, MD, presented at the Bioethics for Breakfast event on February 8, 2018, offering perspective and insight on the topic, “Medicaid Work Requirements: Blood, Sweat and Tears Too?” Leonard Fleck, PhD, moderated this session.
The Trump administration has proposed giving states permission to attach work requirements for Medicaid eligibility. So far, ten states are seeking that permission. Is this a good idea, either from an ethical perspective or a policy perspective? Our speaker, Dr. Adrianne Haggins, is part of a research team at the University of Michigan that evaluated the impact of Michigan’s Medical expansion on employment—as reported in JAMA Internal Medicine (Dec. 11, 2017)—as well as health, and healthcare utilization.
A researcher at Kaiser Health News has added, “States will have to figure out how to define the work requirement and alternative options, such as going to school or volunteering in some organizations; how to enforce the new rules; how to pay for new administrative costs; and how to handle the millions of enrollees likely to seek exemptions.” Dr. Haggins also discussed some of her own research regarding health disparities and emergency department utilization.
Audience participants questioned such things as the administrative costs associated with implementation as well as the value and accuracy of labeling individuals as able-bodied with its attendant underlying stigma of deserving/undeserving of medical care. It was noted that much of the national conversation is linked to racialized assumptions that those utilizing Medicaid benefits are largely persons of color. Finally, many audience members argued the point that all people unconditionally deserve access to health care and some observed how that point too often gets lost in the semantics.
Related Reading:
- “Most who enrolled in Michigan’s Medicaid expansion already work or can’t work,” University of Michigan News
- “Employment Status and Health Characteristics of Adults With Expanded Medicaid Coverage in Michigan,” JAMA Internal Medicine
Adrianne Haggins, MD
Adrianne Haggins is a clinical assistant professor in emergency medicine at the University of Michigan Medical School, and alumnus of the MSU College of Human Medicine class of 2007. She is a member of a research team at the University of Michigan evaluating the impact of Michigan’s Medicaid expansion, the Healthy Michigan Plan, using a mixed-methods approach. This evaluation provides rich data on enrollee and health care provider experiences with the Michigan Medicaid program, as well as health care utilization. Dr. Haggins’ specific interests are related to examining the impact of health care reform on emergency department utilization.
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.
Bioethics for Breakfast: Autism Spectrum Disorder: Fair Sharing of the Therapeutic Pie?
Jeanette M. Scheid, MD, PhD, and Connie Sung, PhD, presented at the Bioethics for Breakfast event on November 30, 2017, offering perspective and insight on the topic, “Autism Spectrum Disorder: Fair Sharing of the Therapeutic Pie?”
Autism Spectrum Disorder (ASD), as the name implies, occurs across a broad spectrum of cognitive, psychological, behavioral, and social interactive manifestations. There is a genetic component to the disorder, though the precise pathology remains something of a mystery. There is no cure for the disorder, though there are some behavioral therapies that address what might otherwise be lifelong manifestations. A number of ethical issues might be raised regarding ASD. First, given some genetic connection to the disorder, should parents be strongly advised to have genetic testing (maybe Whole Genome Sequencing) to inform future reproductive decisions. Second, there are resource allocation issues related to potential therapies. There are at least two evidence-based behavioral interventions that have demonstrated effectiveness in improving aspects of the disorder. There are also a number of “therapies” that have little formal evidence-based support but strong advocates who expect insurance coverage. Third, the two accepted therapies require strong parental involvement in providing/ maintaining these therapies at home (which reduces social costs for these therapies). How might we best ensure such involvement? Fourth, therapeutic resources for ASD are disproportionately available across the lifespan. Is that an injustice? These questions and more were discussed by speakers and attendees.
Jeanette M. Scheid, MD, PhD
Jeanette M. Scheid, MD, PhD, is an Associate Professor of Psychiatry at Michigan State University. She is board certified in general and child and adolescent psychiatry. In that role she teaches medical students and residents and provides clinical care to children, adolescents and adults. Her primary practice sites are in community mental health and child residential treatment facilities. Dr. Scheid sees patients with a broad range of mental health concerns. She has particular interest in the systems of care and issues facing children and adolescents exposed to maltreatment.
Connie Sung, PhD
Connie Sung, PhD, is an Assistant Professor of Rehabilitation Counseling and co-director of Spartan Project SEARCH at Michigan State University. She received her PhD in Rehabilitation Psychology from University of Wisconsin-Madison and completed a pre-doctoral psychology internship at Waisman Center, Madison, WI. Previously as an occupational therapist and now as a rehabilitation counseling educator and researcher, she has over 10 years of experience working with individuals with autism spectrum disorder throughout the lifespan and has a special interest in working with the transition youth population. Currently, she is a principal investigator of several community-based participatory research projects, including evaluation of intervention strategies to improve psychosocial and vocational outcomes of transition-age individuals who are on the autism spectrum.
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.
Dr. Fleck presents at Great Lakes Biorepository Research Network annual scientific meeting
Center Professor Len Fleck, PhD, was a keynote speaker at the Great Lakes Biorepository Research Network (GLBRN) Annual Scientific Meeting, held at Beaumont Hospital-Royal Oak Campus on November 3. The title of Dr. Fleck’s presentation was “Precision Medicine, Ethical Ambiguity,” summarized below.
What is precision medicine? A short answer would be getting beyond “one size fits all” drug therapy, with all the side effects and misfits that implies (e.g. traditional chemotherapy). Instead, medicine would stratify patients with a specific disease, such as some cancer, into subgroups so that therapy could be tailored to the specific genetic features of their cancer. The overall goal is to maximize the beneficial effects of an available therapy for a specific patient, minimize debilitating or dangerous side effects, and save money for the health care system. How could there be ethical problems with goals such as that?
The most significant problem relates to health care justice, the fair distribution of access to the fruits of precision medicine. The basic problem is that these targeted cancer therapies are extraordinarily expensive. More than 70 of these cancer drugs have been approved by the FDA since 2000.
- Cost: $70,000–$200,000+ for a course of treatment.
- One form of combination therapy is priced at $86,000 per month.
- Kymriah for Acute Lymphocytic Leukemia (ALL) is priced at $475,000 for a one-time treatment.
- None of these drugs is curative.
- Median gains in life expectancy for patients is measurable in weeks or months for the most part.
- Several hundred more such drugs are in the pipeline.
- Fojo and Grady have pointed out that these drugs yield incremental cost-effectiveness ratios (ICERs) of several hundred thousand dollars to more than a million dollars per Quality-Adjusted Life Year (QALY).
Imatinib (Gleevec) was approved in 2001 for the treatment of Chronic Myelogenous Leukemia (CML). It is extraordinarily effective for the 70% of these patients who have survived at least ten years beyond diagnosis. It was priced at $36,000 per year in 2001, and must be taken indefinitely. In 2016 imatinib was priced at $146,000, even though nothing at all changed with regard to the drug itself. Another drug, Iclusig, was priced at $120,000 for a year in 2015. In 2016 the price was raised to $200,000. We will pass over in stunned silence at the obvious ethical issues here.
As a society that seeks to be just and caring in meeting health care needs we struggle to identify the ethical norms that should govern access to these targeted cancer therapies. Keep in mind that these drugs are for metastatic cancer, almost always a terminal diagnosis. Consequently, we often appeal to inchoate (and problematic) ethical intuitions. We appeal to the “rule of rescue,” “last chance therapies,” “the pricelessness of human life,” and the “visibility of desperate patients,” all of which seem to generate an ethical obligation to fund access to these targeted therapies. Unfortunately, that obligation runs out of ethical steam once insurance runs out. In health care, our sense of obligation has evolved to select for money.
Some sad conclusions: (1) No moral theories or “compelling” moral arguments are going to yield clearly satisfactory ethical resolution to these allocation/ priority-setting challenges. Not just cancer counts (ethically speaking). (2) Ultimately, given limited resources (money) for meeting unlimited health care needs we will have to rely upon fair and legitimate processes of rational democratic deliberation constrained by relevant clinical evidence and broadly endorsed considered judgments of health care justice. (3) For the foreseeable future, precision medicine will remain infected with clinical uncertainty, ethical ambiguity, disingenuous politicking, and byzantine economic accounting (not to mention pharmaceutical philandering).
Dr. Eijkholt presents at Upper Great Lakes Palliative Care & Hospice Conference
Center Assistant Professor Dr. Marleen Eijkholt recently traveled to Marquette, MI to present at the Upper Great Lakes Palliative Care & Hospice Conference, hosted by Lake Superior Life Care & Hospice.
The conference brought together a wide variety of providers, including home health and hospice providers. Dr Eijkholt’s presentations touched on two controversial areas, through a mix of practical case samples and some theory. Her first talk, “Ethical dilemmas in advance care planning–Mom isn’t herself,” sought to engage participants with the different advance care planning options in Michigan and throughout the U.S. The presentation explored the challenges that come with advance care planning instruments and their application. In Dr. Eijkholt’s second presentation, “Mom wants to die–Professional and personal ethical dilemmas at the end of life,” the participants discussed different end-of-life scenarios, patient perspectives, and wishes. The presentation and discussion also explored distinctions and strategies for dealing with patient requests at the end of life.
Dr. Stahl presents at Michigan’s first statewide Advance Care Planning conference
Center Assistant Professor Dr. Devan Stahl recently presented at the Michigan Advance Care Planning Conference: Strengthen Best Practices & Community Engagement. The conference was held October 13-14 in Lansing and presented by the Michigan Primary Care Consortium.
Dr. Stahl presented on “Recurrent and Neglected Ethical Challenges in Advance Directives.” The presentation reviewed the ethical challenges providers and surrogates face when implementing advance directives. Those in attendance discussed how to evaluate and resolve these ethical challenges that commonly occur in the acute setting, as well as how to develop strategies for helping patient patients to create meaningful and clinically useful advance directives. The group also discussed the potential use of patience preference predictors as described by Drs. Stahl and Tomlinson in their recent podcast episode: The Patient Preference Predictor: Tomlinson and Stahl – Episode 1.
Dr. Stahl visits Southeast University in China
Last month, Center Assistant Professor Dr. Devan Stahl traveled to Nanjing, China to visit Southeast University. Dr. Stahl’s host was Dr. Guobin Cheng, who recently spent one year at MSU collaborating with Center faculty. Dr. Stahl had the opportunity to meet with Southeast University faculty and graduate students in the School of Humanities, as well as Sociology and Public Health. She also spent time with faculty in bioethics at Nanjing Medical School, and visited two hospitals, meeting various clinicians.
While at Southeast University, Dr. Stahl gave two planned lectures, one to medical students and one to graduate students in bioethics. There was much discussion regarding differences and similarities between American and Chinese bioethics.
Dr. Stahl had a very positive experience, and she was able to investigate possibilities for a potential future MSU education abroad program. Dr. Stahl is thankful to Southeast University and the Office for Education Abroad for supporting her trip.
Bioethics for Breakfast: Charlie Gard and Solomon’s Dilemma: What are the limits of parental medical decision making?
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.
Bioethics for Breakfast: Treating Pain Without Feeding Addiction: Is There a Goldilocks Solution?
Forrest Pasanski, JD, and Steven Roskos, MD, presented at the Bioethics for Breakfast event on April 20, 2017, offering perspective and insight on the topic, “Treating Pain Without Feeding Addiction: Is There a Goldilocks Solution?”
In August 2016 the Michigan Department of Licensing and Regulatory Affairs (LARA) created a permanent Drug Monitoring Section to stem the state’s prescription drug abuse epidemic, tightening its monitoring of physicians’ opioid prescribing. Certainly as the ones who write the prescriptions, physicians should help remedy the prescription opioid epidemic. But they also have a responsibility to effectively manage the pain their patients experience. In striving to meet one of these responsibilities, will they fail to meet the other? Or is there a place in the middle that is ethically “just right?” How might they optimally collaborate with the state to ensure the best interests of its citizens?
Mr. Pasanski discussed the scope of the opioid epidemic in Michigan as well and the state’s response, highlighting efforts to identify, investigate, and take substantial licensing actions against overprescribers. Dr. Roskos offered a physician perspective, touching on trust in the doctor-patient relationship and how state regulations may create tension within that relationship.
Forrest Pasanski, JD
Forrest Pasanski, JD, is Regulation Section Manager, Drug Monitoring Section for State of Michigan, Michigan Department of Licensing and Regulatory Affairs, Bureau of Professional Licensing where he oversees the Michigan Automated Prescription System (MAPS) and staff who identify, investigate, and bring administrative actions against health professionals who overprescribe, overdispense or divert controlled substances. He studied philosophy and political science at Grand Valley State University and graduated from the Michigan State University College of Law.
Steven Roskos, MD
Steven E. Roskos, MD, is an associate professor in the Department of Family Medicine in the Michigan State University College of Human Medicine, where he also serves as associate chair for academic affairs. He received his MD from Temple University School of Medicine, Philadelphia, Pennsylvania and completed a family medicine residency at Lancaster General Hospital, Lancaster, Pennsylvania. Dr. Roskos practiced in southern Appalachia for seven years, then taught at the University of Tennessee before completing a fellowship in academic medicine at Michigan State and then joining the faculty. He has a clinical interest in treating patients with chronic pain and served on the Michigan Advisory Committee on Pain and Symptom Management for five years.
MSU Bioethics 