Center Assistant Professor Dr. Laura Cabrera is co-author of an article published last month in Frontiers in Human Neuroscience. Appearing in the Brain Imaging and Stimulation section of the journal, “International Legal Approaches to Neurosurgery for Psychiatric Disorders” was written by an international group of researchers.
Abstract: Neurosurgery for psychiatric disorders (NPD), also sometimes referred to as psychosurgery, is rapidly evolving, with new techniques and indications being investigated actively. Many within the field have suggested that some form of guidelines or regulations are needed to help ensure that a promising field develops safely. Multiple countries have enacted specific laws regulating NPD. This article reviews NPD-specific laws drawn from North and South America, Asia and Europe, in order to identify the typical form and contents of these laws and to set the groundwork for the design of an optimal regulation for the field. Key challenges for this design that are revealed by the review are how to define the scope of the law (what should be regulated), what types of regulations are required (eligibility criteria, approval procedures, data collection, and oversight mechanisms), and how to approach international harmonization given the potential migration of researchers and patients.
The full article is available online with free and open access from Frontiers.
Center for Ethics professor Dr. Leonard M. Fleck is among a group of seventeen international co-authors of “Heritable Human Genome Editing: The Public Engagement Imperative,” published in the December 2020 issue of The CRISPR Journal.
Abstract: In the view of many, heritable human genome editing (HHGE) harbors the remedial potential of ridding the world of deadly genetic diseases. A Hippocratic obligation, if there ever was one, HHGE is widely viewed as a life-sustaining proposition. The national go/no-go decision regarding the implementation of HHGE, however, must not, in the collective view of the authors, proceed absent thorough public engagement. A comparable call for an “extensive societal dialogue” was recently issued by the International Commission on the Clinical Use of Human Germline Genome Editing. In this communication, the authors lay out the foundational principles undergirding the formation, modification, and evaluation of public opinion. It is against this backdrop that the societal decision to warrant or enjoin the clinical conduct of HHGE will doubtlessly transpire.
The full text is available with free access on the publisher’s website.
While the bare supermarket shelves of early March have been replenished (except for the bucatini shelf, apparently), many are still struggling to get adequate food. An estimated 54 million people in the U.S. now face food insecurity, “the disruption of food intake or eating patterns because of lack of money and other resources.” This is an increase of over 17 million since the start of the pandemic.
Another change is where people eat and with whom. Restrictions on indoor dining and shifts to online work and school mean that many are cooking and eating at home more often than before. Stay-at-home orders, gathering restrictions, and the closure of dining rooms in workplaces and institutions also mean that many are limiting their dining companions to those within their own households. For some, this means eating alone. For example, in summer 2020, 87% of nursing home residents ate most of their meals in their rooms alone, up from 32% prior to the pandemic.
Emotional or stress eating is also on the rise. It may come as no surprise to those of us who have endured 2020 and the first few weeks of 2021 that many are using food as “a way to suppress or soothe negative emotions, such as stress, anger, fear, boredom, sadness and loneliness.” These are just a few of the ways the pandemic has impacted eating in the U.S., but each offers lessons about some of the ethical challenges we face regarding food and eating.
Who stays hungry?
In the U.S., many of those who face food insecurity are children: 30 million children regularly rely on schools for free or reduced-price meals. But due to pandemic-related school closures, only 15% of eligible kids are now receiving these meals. As Cory Turner notes, many school districts have shifted to a meal pickup plan, but lack of transportation and time off from work mean that some caregivers cannot retrieve meals during scheduled pickup times. While some school districts have made creative efforts to distribute meals in other ways, many children go without.
These logistical challenges echo ongoing issues with the distribution of other goods and services essential to good health. Mitchell Katz argues that the U.S. health care system assumes that patients are middle-class; accessing medical care often requires reliable transportation, time off during working hours, or paid sick leave, which many working-class people simply do not have.
Like health care, food assistance is only helpful if it is accessible to those who need it. Emergency food benefits programs like the Pandemic EBT give eligible children’s caregivers much more flexibility, enabling them to purchase groceries on their own schedule. However, only six states and Puerto Rico have renewed this program for the 2020-2021 school year.
The value of eating
Asked to look ahead to 2021, many people said that when it comes to food, they were most excited to once again share meals with family and friends.
This desire for shared dining highlights the fact that eating is a rich source of value that extends far beyond nutrition, pleasure, or ostensible effects on body weight, whatever those New Year’s diet ads try to tell us.
There is social value in sharing a meal with coworkers, friends, or neighbors; cultural value in holiday meals, wedding feasts, funeral receptions, graduation toasts; aesthetic value in enjoying food and drink in the ambiance of a restaurant, café, or bar. Eating with others can also have moral value; it provides opportunities to show respect for others, build moral character, and establish moral community.
Some of this value can be found in eating at home. But for many, foregoing meals with friends, dates, colleagues, and loved ones has impoverished day-to-day life. This is not an argument against public health restrictions on dining; there are good, evidence-based reasons for many of these regulations (though more should be done to support restaurants and food service workers while indoor dining remains high risk). But acknowledging these losses enables us to mitigatethemwhere possible, and where not, at least recognize they are worth mourning.
Eating and self-control
A final lesson can be learned from emotional eating, which is often framed as a lapse in self-control, “giving in” to cravings for unhealthy but comforting foods. I have argued elsewhere against the idea that such “mindless” eating is necessarily bad. Here I’ll highlight one way that pandemic-related increases in emotional eating point to the limited role of self-control in determining how we eat.
For many, the pandemic has meant the collapse of eating routines and schedules alongside significant changes in physical proximity to food. Instead of having access to food only in the work lunchroom or on scheduled breaks, some people now work all day next to their refrigerators. Parents who would normally spend the school day working, running errands, socializing, or exercising, may spend much of their day in the kitchen preparing food for their kids.
As Quill R. Kukla puts it, our routines, schedules, and social and material surroundings constitute scaffolding for our actions. They constrain and enable what we do. When we are able to exercise self-control or agency, it is often because we have supportive scaffolds in place. So it’s entirely unsurprising that we eat differently when our daily structures of living have changed so radically. Recognizing this can help us avoid unjustly shaming ourselves and others for our eating, and also help us strategize more effectively about how to change that eating, if we so desire. It is important to acknowledge that now—as always—our ability to construct and inhabit supportive scaffolding is limited by work and family obligations, resources, living situations, and the like. And as many of us have learned over the past year, sometimes much of that is out of our direct control.
Megan A. Dean, PhD, is an Assistant Professor in the Department of Philosophy at Michigan State University. She works in feminist bioethics, with a focus on the ethics of eating.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Tuesday, February 4, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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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.
While past Bioethics for Breakfast events were held in person, this year’s series is taking place virtually. The series is generously sponsored by Hall, Render, Killian, Heath & Lyman.
A lot of attention has been given recently to the social, political, ethical, and economic challenges associated with long-term care. Nursing homes and long-term care facilities have suffered during the COVID-19 pandemic, but at the same time, the pandemic has given these issues more public visibility. There are several large questions to consider: What are the major challenges facing long-term care today? How should long-term care be financed? What would motivate individuals to purchase long-term care insurance? What are the consequences for Medicaid if we see increased reliance on Medicaid for long-term care funding (keeping in mind continued growth of the elderly population and dementing illness)? What policy options are available for addressing all these challenges? Should those policy options be left to the states? What, if any, is the role of the federal government?
Discussing financing, proposals, and reforms related to long-term care insurance in the U.S., Sarah Slocum reminded attendees of our present-day circumstances by giving a brief overview of Medicare and Medicaid, beginning in the 1965 when they were passed at the federal level. The original design did not include long-term care. By the 1980s, the version of Medicaid could bankrupt entire families if one member of a married couple needed to enter a nursing home. In the 1990s, spousal impoverishment provisions were enacted to protect the assets of individuals. Many states began regulating long-term care insurance, however, policies remained very expensive and were very hard to market. For those who did choose to purchase long term care insurance, their premiums increased as they got older. Bringing us to the present, Slocum discussed Michigan reforms that began to be planned in 2017. One option that the Michigan legislature will have to consider is a 0.5-1% payroll tax contribution for all individuals to fund a long-term care program. Slocum shared the example of a new program in the state of Washington, noting that watching how well the program does could help inform decisions made in Michigan and other states.
Anne Montgomery then offered insight into policy considerations at the federal level, based on her work in Washington, D.C. The cost of long-term care insurance remains a challenge to many people. Additionally, one in five middle-income seniors will become impoverished, typically turning to Medicaid to cover their long-term care costs. More than half of Americans who enter old age today will have a long-term care need for constant attendance, something that is very costly. Montgomery shared the possibility of federal social insurance, though that possibility depends on how legislation is drafted and considered by Congress. Discussing Medigap, Montgomery suggested adding long-term care services and supports to the existing coverage. Montgomery also brought forth the need for a bigger and better trained long-term care workforce, and the need for other infrastructure and home and community-based service improvements. Montgomery then shared predictions on what the Biden administration may be looking to do beginning in 2021, touching on the Affordable Care Act and the Center for Medicare and Medicaid Innovation. Finally, Montgomery discussed the need for culture change and quality improvement within nursing homes, such as moving to a person-centered model.
The discussion portion of the session included questions about how hospice and palliative care interface with long-term care insurance, how family caregivers could be compensated under a new model, and the overall appetite of the American public for the changes discussed by Slocum and Montgomery.
Anne Montgomery Anne Montgomery is Co-Director at Altarum’s Program to Improve Eldercare, where she oversees a portfolio of quality improvement and research projects focused on older adults and long-term services and supports. Montgomery has more than two decades of policy experience working on Medicare, Medicaid and related programs. Montgomery served as a Senior Advisor for the U.S. Senate Special Committee on Aging, where she developed policy included in the Affordable Care Act, including policy to upgrade quality in the nursing home sector; expand options for states offering home and community-based services; improve direct care worker training; and improve state Medicaid assessment processes. Montgomery also worked for the House Ways & Means Committee, the Government Accountability Office and the Alliance for Health Policy in Washington, D.C., and was awarded the Atlantic Fellowship in Public Policy to conduct comparative analysis of family caregiver policy in the U.S. and the UK. Montgomery received an MS in Journalism from Columbia University.
Sarah Slocum Sarah Slocum joined the Altarum Program to Improve Elder Care in the fall of 2016. As Co-Director of Altarum’s Program to Improve Eldercare, Ms. Slocum strives to improve the quality of life and care for frail elders living with disability. Just prior, she served 13 years as Michigan’s State Long Term Care Ombudsman, leading advocacy for Michigan citizens living in long term care facilities. She has led policy change efforts in the state Medicaid program, long term care regulations, the Certificate of Need program, and with the Michigan legislature. Ms. Slocum has testified on nursing home quality before the U.S. Senate Special Committee on Aging. She has worked for over three decades in aging and long term care advocacy at the state and national levels. Ms. Slocum received an MA in Bioethics from the Michigan State University College of Human Medicine.
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.
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).
The excitement and potential of CRISPR to treat severe genetic conditions by editing disease-causing DNA has taken an unexpected hit. A recent Wall Street Journal article highlighted the unexpected results from a CRISPR study in which attempts to edit a human gene responsible for blindness resulted in the loss of the entire chromosome from the cells in the embryos. These results echo another study conducted in human cell lines published earlier in 2019.
CRISPR is a targeted gene editing process that allows scientists to direct genetic modifications with far more precision than prior procedures. CRISPR has been touted as a gigantic leap in the ability to modify DNA by creating or repairing pinpoint DNA mutations without affecting other areas of the chromosome on which the gene resides. The recent study indicates that the technique might not be as straightforward in humans – and thus neither will be its use to fight disease.
CRISPR Technology – Promise and Problems
The value in CRISPR mediated genetic modification can be seen in a wide variety of biotechnology products, such as genetically modified crops and new biologics. But perhaps the most exciting and most controversial potential for CRISPR can be found in the desire to modify embryonic genomes to remove genetic abnormalities for which we currently have no cure.
This promise of embryonic gene editing is appealing not only because it would remove the condition from the child born from the gene-edited embryo, but also because the offspring of that child would also be free of the condition. CRISPR gene editing – because it is done at the embryonic stage – creates germline mutations that are passed to future generations. In a therapeutic use of CRISPR, those mutations would be cures for often untreatable diseases.
However, it is this very promise that raises many of the problems with CRISPR embryonic gene editing. Much debate has surrounded embryonic gene editing. Until this recent news, there were fears that CRISPR may make gene editing too easy. The technological development of CRISPR in embryonic gene editing is moving at a breakneck pace as scientists around the world are working on procedures. Biohackers work in their garages and livestream the use of CRISPR to edit their own genomes.
Many are debating which genes should be targeted and how fast the research into actual trials should proceed. Most agree that severe diseases would be the best place to start, but should the technology be deployed for cosmetic benefits such as eye color, or diseases for which a treatment exists? The dangers of CRISPR editing are unclear, and there has been an informal moratorium on the use of the technology to create children. Despite that, there has been at least one rogue scientist who has created genetically modified embryos and brought them to full term birth.
International Policy on Human Gene Editing
The scientific research is not occurring in a vacuum. Each country decides how CRISPR can be used in its medical system – both when the technique is safe enough and on which diseases it should be used.
An international commission recently pronounced that the technology is not ready for clinic implementation because scientists don’t understand the full safety issues surrounding its use in human embryos. The commission described some of the potential clinical uses in the future and outlined a basic safety protocol for approval.
One of the creators of CRISPR, Jennifer Doudna, has also spoken out against applying CRISPR too hastily to embryonic gene editing.
Based on the recent studies showing loss of chromosomes, the international commission and other scientists are correct to call for a moratorium on clinical embryonic gene editing.
CRISPR – The Path Forward
The setback in CRISPR gene editing does not mean that the technology and research should be discarded. The potential to change lives is too great; however, the dangers of use with our current understanding are even greater. So how do we move forward with CRISPR in embryonic gene editing? The answer must include balance – in research strategies and in voices.
While the technology is not ready for clinical use, and we have not yet determined which uses would be appropriate if it were available, the science should not stand still. The research surrounding CRISPR gene editing will yield insights into human biology that we cannot predict. For example, the loss of chromosome length in human embryonic cells undergoing CRISPR treatment seems to be different than the response of other species of embryonic cells. And debates about the appropriate use of the technology will allow us to discover more about ourselves as humans.
As we debate the best way to develop and deploy CRISPR technology, we should look to a variety of stakeholders. Scientists have a solid track record in understanding when recombinant DNA technology has potentially hazardous implications. In the 1970s, the Asilomar Conference allowed scientists to put together research guidelines that allowed the technology to be developed without harming public health. In fact, the international scientific consensus not to use the technology such as described above indicates that scientists are beginning that work. Such a moratorium on clinical uses gives us time to understand how to deploy the technology in the safest manner.
Additionally, there is a role for the voices of the patients whose lives could be changed by the technology. Patients may not be in the best place to judge when the technology should be deemed safe enough to deploy, but they certainly will have input about which mutations cause hardships that merit the risk of germline editing. Many of these patients already work with scientists on potential treatments for their diseases. CRISPR discussions may open another avenue for many.
Finally, there is a role for legal regulation of the use of CRISPR. Governments should listen to the voices of scientists and potential patients in drafting these regulations. But as shown by the example of at least one rogue scientist, there needs to be teeth to the moratorium on CRISPR clinical use at this time. CRISPR and its use in human gene editing raise complicated issues and hold great promise as a powerful tool to defeat genetic diseases. The development of those technologies will not be straightforward or without risk and will require more basic science research to achieve clinical efficacy. But with proper planning, we may learn more about ourselves as humans on the path to a cure.
Jennifer Carter-Johnson, PhD, JD, is Associate Dean for Academic Affairs and Associate Professor of Law in the Michigan State University College of Law. Dr. Carter-Johnson is a member of the Michigan State Bar. She is registered to practice before the U.S. Patent and Trademark Office.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Tuesday, December 15, 2020. 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.
In the current issue of the Hastings Center Report, Center Acting Director and Professor Dr. Leonard Fleck shared a perspective on “Some Lives Matter: The Dirty Little Secret of the U.S. Health Care System.”
Abstract: Our health care system in the United States reflects the inequities that are part of the larger society, which is why our system for financing access to needed and effective health care is so complicated and unfair.
Center for Ethics Assistant Director Libby Bogdan-Lovis has an essay in the latest issue of Narrative Inquiry in Bioethics. In her essay, “The Trip to the Dentist,” Bogdan-Lovis writes about her mother, and of a specific experience that would greatly influence subsequent end-of-life decision-making.
The essay appears in the Summer 2020 issue of the journal, which is published by Johns Hopkins University Press. The issue is centered on “Living with Alzheimer Disease and Other Types of Dementia: Stories from Caregivers.”
The full text is available online via Project MUSE (MSU Library or other institutional access may be required to view this article).