In this information age, the ways patients gather information about their health and how they process this information to make decisions, within the constraints of their particular social context, is of utmost importance. Dr. Kelly-Blake explained the value and ethical aspects of shared decision-making to enhance nutrition adherence goals, help practitioners understand the constraints of the dietitian and client dyad mismatch, and address this mismatch with the goal of advancing professional practice.
This month the Center was proud to officially announce its new name: Center for Bioethics and Social Justice. This name change reflects an updated mission with a focus on social justice-oriented bioethics. This episode features a conversation between Director Sean Valles, PhD, and Assistant Director Karen Kelly-Blake, PhD. Together they discuss moving forward in the bioethics space, what engaging in service to the people means to them, and the important work to be done to a create a healthier and more socially just world. They also explore questions related to the practical application of bioethics, and the challenge of preparing medical students for clinical practice in an inequitable world.
This episode was produced and edited by Liz McDaniel in the Center for Bioethics and Social Justice. Music: “While We Walk (2004)” by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License. Full episode transcript available.
About: No Easy Answers in Bioethics is a podcast series from the Center for Bioethics and Social Justice in the Michigan State University College of Human Medicine. Center faculty and their collaborators discuss their ongoing work and research across many areas of bioethics. Episodes are hosted by H-Net: Humanities and Social Sciences Online.
The MSU Center for Ethics and Humanities in the Life Sciences is proud to announce its new name: Center for Bioethics and Social Justice. This name change as of April 1 reflects an updated mission with a focus on social justice-oriented bioethics. The Center has a vision of a health system that is compassionate, respectful, and responsive to people’s needs, so that equity, inclusion, and social justice are available to all.
“Without an orientation, bioethics has no built-in real-world goals; it is merely a field of study. Doing social justice-oriented bioethics means we have a goal—advancing social justice in the real world with meaningful applications—as the north star for our journey as an institution,” said Center Director Sean A. Valles, PhD.
The updated name and mission follow the appointment of Valles as director earlier this year, along with the promotion of Karen Kelly-Blake, PhD, to assistant director.
“One key piece of the new name and mission is a rethinking and a recommitting of our identity,” said Valles. “The Center aims to be a hub for collaborations and conversations around the relationship between social justice and health. To do that, we will actively seek to engage with our college and university colleagues, local communities, and organizations in order to learn their concerns about the ways our society makes it hard to live a healthy life, and to begin trying to help.”
The Center’s mission is to educate health professionals with skills, knowledge, and attitudes necessary to contribute to a world in which health practices are equitable, inclusive, and bolstered by conditions of social justice; to research the nature of bioethics and enhance its applications to the pursuit of equitable, inclusive, and just healthy societies; and to engage researchers, clinicians, policymakers, and communities around shared interests in the attainment of a healthier and more just world.
“Building bridges among MSU experts and outward to communities is of value to everyone involved,” added Valles.
The Center began in 1977 with the formation of the Medical Humanities Program. In 1988, the program became the Center for Ethics and Humanities in the Life Sciences. Faculty in the Center are committed to teaching medical students in the College of Human Medicine and developing social context of clinical decisions content for the Shared Discovery Curriculum. Center faculty are also committed to research, scholarship, and public outreach and education—all working toward the goal of creating a more just world.
Visit the Center’s website to learn more about its faculty and outreach activities, such as public seminars, podcast episodes, and monthly blog posts that explore timely bioethics topics.
This episode focuses on work being done in Michigan to support the well-being of farmers, agribusiness professionals, and the broader statewide agricultural community. Dr. Karen Kelly-Blake, assistant director and associate professor in the Center for Ethics and Humanities in the Life Sciences, is joined by Community Behavioral Health Extension Educator Eric Karbowski, and Dr. Melissa Millerick-May, who holds appointments in the Division of Occupational and Environmental Medicine, Environmental Health & Safety, and Michigan State University Extension. Mr. Karbowski shares MSU Extension resources available to farmers experiencing stress, including webinars, teletherapy, and other programs that help to reduce stigma still associated with behavioral health. Dr. Millerick-May discusses her ongoing work on farm safety, including tools developed in response to the COVID-19 pandemic. Both guests also discuss what led them to the work they are currently doing at MSU.
This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: “While We Walk (2004)” by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License. Full episode transcript available.
About: No Easy Answers in Bioethics is a podcast series from the Center for Ethics and Humanities in the Life Sciences in the Michigan State University College of Human Medicine. Center faculty and their collaborators discuss their ongoing work and research across many areas of bioethics. Episodes are hosted by H-Net: Humanities and Social Sciences Online.
Dr. Leonard Fleck, professor in the Center for Ethics, participated in a keynote debate this month as part of the 24th annual International Bioethics Retreat that was presented virtually from Paris. Each year, “experts in medicine, philosophy, law, and health policy are invited from around the world to present their current research projects.”
Within the debate format, Dr. Fleck addressed the question: “Whole Genome Sequencing: Should It Be Publicly Funded?” Dr. Fleck defended the affirmative in this debate, while Dr. Leslie Francis of the University of Utah defended the negative. Continue reading below for Dr. Fleck’s summary of the debate.
Whole Genome Sequencing: Should It Be Publicly Funded?
Below are the key elements in the affirmative side of that debate, as well as acknowledgment of legitimate points made by Dr. Francis.
We can start with the question of what Whole Genome Sequencing [WGS] is. It refers to creating a complete map of all three billion base pairs of DNA in an individual. Next, how might WGS be used? It can be used for preventive, diagnostic, therapeutic, reproductive, and public health purposes? It can be used by adults as part of a preventive strategy, i.e., identifying genetic vulnerabilities to disorders that might be managed or prevented through behavioral change. WGS can be used diagnostically to correctly identify very rare disorders that otherwise will require a costly and painful diagnostic odyssey. This is most often true in the case of infants.
WGS is used therapeutically in the case of metastatic cancer. Both the patient and cancer tumors would be mapped in order to find a genetic driver of the cancer that could then be attacked with a targeted cancer therapy, such as trastuzumab to attack a HER2+ breast cancer. WGS can be used in a reproductive context to do non-invasive prenatal assessment of a fetus. Likewise, some advocate using WGS to do neonatal genetic screening in place of the heel stick and blood draw that will test for 56 childhood genetic disorders. WGS could test for hundreds of very rare genetic disorders that can affect children. The public health context is very visible right now as we do WGS of the COVID variants now emerging.
Why public funding? The key argument is that it is a matter of health care justice. WGS costs about $1000 for the sequencing itself, and another $2000 for the analysis, interpretation, and counseling. Insurers will generally not pay for WGS. Roughly, only the top quintile in the U.S. economic spectrum can afford to pay for WGS out of pocket. This can yield significant health advantages for them, most especially avoiding various sorts of genetic harms. More precisely, the relatively wealthy might learn of one or more health risks through WGS that would suggest the need for additional testing and therapeutic interventions, all of which would be paid for by their insurance. The less financially well off may have good health insurance but be unaware of the need to use it in a timely way without the advantage of WGS. One possible result is that a curable disease becomes incurable when symptoms are clinically evident. This is an injustice that can be avoided if access to WGS is publicly funded.
My esteemed debate partner Dr. Francis emphasized that the ethics issues are much more complex than simply matters of health care justice. The distinctive feature of any form of genetic testing is that it yields considerable information about any number of first-degree relatives who may or may not want an individual to know that information. If we do WGS on a neonate, for example, we might discover that neonate has an APOE 4/4 variant for early dementia. That means at least one parent has that vulnerability, which they might not wish to know. In addition, do those parents have any obligation to notify any other relatives of their potential vulnerability? What if, instead, it was a BRCA1 mutation for breast or ovarian cancer? More problematic still, what if WGS is used at public expense in prenatal screening with the result that some parents choose to have an abortion. Would advocates for a Right to Life view have a right to object to their tax dollars being used to facilitate access to a procedure to which they conscientiously object? This is why we have debates.
The 2020-2021 Bioethics Public Seminar Series continues next month on March 24. You are invited to join us virtually to learn about artificial intelligence and healthcare data ownership. Our seminars are free to attend and open to all individuals.
Healthcare Artificial Intelligence Needs Patient Data: Who “Owns” the Data About You?
Artificial intelligence (AI) is increasingly used in modern medicine to improve diagnostics, therapy selection, and more. These computer algorithms are developed, trained, and tested with our patient medical data. Certainly beyond the healthcare space, many companies—from Facebook to Amazon to your local pub—are using our consumer data. This is data about you, but is it your data? What rights do you have versus the owners of the data? Does medical data used for the benefit of future patients deserve different treatment than consumer data? This lecture will explore examples of AI and an evolving view of data ownership and stewardship in medicine.
Join us for Dr. Alessio’s online lecture on Wednesday, March 24, 2021 from noon until 1 pm ET.
Adam M. Alessio, PhD, is a professor in the departments of Computational Mathematics, Science, and Engineering (CMSE), Biomedical Engineering (BME), and Radiology. He earned a PhD in Electrical Engineering at the University of Notre Dame and then joined the University of Washington faculty where he was a Professor in the Department of Radiology until 2018. He moved to MSU to be part of the new CMSE and BME departments and the Institute for Quantitative Health Science and Engineering. His research is focused on non-invasive quantification of disease through Artificial Intelligence-inspired algorithms. Dr. Alessio’s research group solves clinically motivated research problems at the intersection of imaging and medical decision-making. He is the author of over 100 publications, holds 6 patents, and has grant funding from the National Institutes of Health and the medical imaging industry to advance non-invasive cardiac, cancer, and pediatric imaging. Dr. Alessio is also the administrative director of the new Bachelor of Science in Data Science at MSU and is looking for partners in the development of a data ethics curriculum at MSU.
The Center for Ethics and Humanities in the Life Sciences is pleased to announce the appointment of Dr. Sean A. Valles as Center Director. Additionally, associate professor Dr. Karen Kelly-Blake has been promoted to Assistant Director.
Dr. Sean A. Valles is a philosopher of health specializing in the ethical and evidentiary complexities of how social contexts combine to create patterns of inequitable health disparities. He was most recently an associate professor in Lyman Briggs College and the Department of Philosophy at Michigan State University. He served as Director of Graduate Programs in the Department of Philosophy, and Director of the interdisciplinary Science and Society at State program. 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.
Dr. Valles is author of the 2018 book Philosophy of Population Health: Philosophy for a New Public Health Era. He is also co-editor of the Oxford University Press book series “Bioethics for Social Justice.” Dr. Valles received his PhD in History and Philosophy of Science from Indiana University Bloomington.
Dr. Karen Kelly-Blake is an associate professor in the Center for Ethics and the Department of Medicine. She has been with the Center since 2009. Her research interests include health services research, shared decision-making, decision aid development and implementation, clinical communication skills and training, mHealth, racism and morbidity and mortality, bioethics, medical workforce policy, and men’s health.
Dr. Kelly-Blake is a co-investigator on the NIH-funded project “Improving Diabetic Patients’ Adherence to Treatment and Prevention of Cardiovascular Disease.” She is also co-chair of the College of Human Medicine Admissions Committee. Dr. Kelly-Blake received her PhD in Medical Anthropology from Michigan State University.
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.
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.
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.
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.
Authors Aakash A. Dave and Dr. Laura Cabrera, Assistant Professor in the Center for Ethics, have an article in the December issue of the Journal of Cognitive Enhancement. The article, “Osteopathic Medical Students’ Attitudes Towards Different Modalities of Neuroenhancement: a Pilot Study,” was available online first in January of this year.
Abstract: The advancement of society has coincided with the development and use of technologies intended to improve cognitive function, which are collectively known as neuroenhancers. While several studies have assessed public perception towards the moral acceptability of pharmacological and device-based cognitive enhancers, just a few have compared perceptions across different modalities of cognitive enhancers. In this pilot study, 154 osteopathic medical students were asked to read one of six possible vignettes describing a certain type of improvement—therapy or above the norm—brought about by using one of three modalities—neurodevice, pill, or herbal supplement. Subjects answered questions that were designed to reveal their attitudes towards the given scenario. Our participants suggested that improvement using neurodevices and herbal supplements is more acceptable than when pills are used. We also found that acceptable attitudes towards cognitive enhancement were subserved by reasons such as “positive outcome from use” and “it’s safe” and unacceptable attitudes by reasons such as “safety concerns” and “no need.” Furthermore, a majority of participants would prefer to consult with a physician regarding the use of cognitive enhancers prior to accessing them. These results provide novel insights into pressing neuroethical issues and warrant further studying.
The full text is available online via Springer Link (MSU Library or other institutional access may be required to view this article).
Center Acting Director and Professor Dr. Leonard Fleck spoke earlier this month at a virtual symposium presented by University of Groningen in Groningen, Netherlands.
The event’s theme was “Barriers and future directions of personalized medicine: from the bench to the patients.” Dr. Fleck’s presentation was titled “Precision Medicine/Ethical Ambiguity: Rough Justice, Wicked Problems, fragmented Solidarity.” The symposium was funded by the European Union’s Horizon 2020 research and innovation program. As one of several keynote speakers, Dr. Fleck provided an ethicist perspective. Dr. Fleck has provided a summary of his presentation below.
Solidarity is a fundamental social value in many European countries, though its precise practical and theoretical meaning is disputed. In a health care context, solidarity means roughly equal access to effective health care for all. However, I argued that precision medicine represents a threat to solidarity. Precision medicine includes ninety targeted cancer therapies (mostly for metastatic cancer). The “targets” of these therapies are certain genetic features of a cancer, mutations responsible for “driving” that cancer’s expansion. These targeted therapies have prices of €100,000 (roughly 117,500 USD) to €150,000 (roughly 176,300 USD) annually or for a course of treatment. Our critical question: Must a commitment to solidarity mean that all these targeted cancer therapies are included in a benefit package guaranteed to all in the European Union, no matter the cost, no matter the degree of effectiveness? Such a commitment would imply that cancer was ethically special, rightfully commandeering unlimited resources. That in itself undermines solidarity. I offered multiple examples of how current and future dissemination of these drugs challenges a commitment to solidarity. An alternative is to fund more cancer prevention efforts. However, that too proves a threat to solidarity. Solidarity is too abstract a notion to address these challenges. We need instead the notion of “just solidarity.” We need to accept that we can only hope to achieve “rough justice” and “supple solidarity.” The precise practical meaning of these notions needs to be worked out through fair and inclusive processes of rational democratic deliberation, which is the real foundation of solidarity.