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.
Mark G. Kuczewski, PhD, of the Loyola University Chicago Stritch School of Medicine presented at the April 22 Bioethics for Breakfast session, offering perspectives and insight on the topic “Caring with and for undocumented physicians and patients.” Bioethics for Breakfast is generously sponsored by Hall, Render, Killian, Heath & Lyman.
The session addressed the contributions of undocumented immigrants to our communities in the United States, including those of DACA (Deferred Action for Childhood Arrivals) physicians, to our healthcare system; the limits that exclusionary practices place on the contributions of undocumented immigrants to our healthcare system; and approaches to facilitating better care of undocumented immigrants in the healthcare system.
Dr. Kuczewski shared facts about undocumented immigrants in the U.S.: they number approximately 10-12 million, approximately two-thirds have lived in the U.S. for more than 10 years, they cannot buy a full-priced policy on an ACA exchange, they commit crimes at lower rates than U.S. citizens, an increasing percentage are of Asian origin, and there are fewer in the U.S. now than in 2010. He pointed out that excluding these individuals from obtaining health insurance through the Affordable Care Act ends up harming the overall pool of people in the insurance marketplace.
Dr. Kuczewski also explained how U.S. immigration policies have changed since the Clinton administration and now those policies have created barriers to entering the U.S. lawfully and with authorization, with regard to application rules and the quota system.
“This is a people issue,” said Dr. Kuczewski, adding that the stable population of 10-12 million undocumented immigrants in the U.S. have healthcare needs, and need to be able to seek care. Using the example of someone in need of kidney dialysis, he pointed out that the usual route of getting Medicare coverage is not an option because federal benefits are not available to undocumented immigrants. Dr. Kuczewski highlighted the importance of hospitals and clinics caring for undocumented patients and advocating for them, in order to foster trust over fear, and in turn help to avoid negative impacts on public health.
Finally, Dr. Kuczewski discussed the challenges for DACA recipients who matriculate through medical school while being ineligible for federal student loans. The discussion portion of the session explored the importance of educating people, including politicians, on revisions to the ACA, and avenues for advocacy work for schools and universities, students, medical professionals, and instructors. Related resources are linked below.
Open access article: Kuczewski MG, Mejias-Beck J, Blair A. Good Sanctuary Doctoring for Undocumented Patients. AMA Journal of Ethics. 2019;21(1):E78-85. DOI: 10.1001/amajethics.2019.78.
Mark G. Kuczewski, PhD Mark G. Kuczewski, PhD, is the Fr. Michael I. English, S.J., Professor of Medical Ethics and the director of the Neiswanger Institute for Bioethics at the Loyola University Chicago Stritch School of Medicine. Mark is a past president of the American Society for Bioethics and Humanities (ASBH) and a Fellow of the Hastings Center. He has been engaged in bedside clinical ethics issues for more than 25 years. For the last decade, he has been an articulate spokesperson for the just and equitable treatment of immigrant patients. He created the Sanctuary Doctor website with Drs. Johana Mejias-Beck and Amy Blair to assist clinicians in supporting immigrant patients. He led the effort to make the Stritch School of Medicine the first medical school in the nation to openly welcome applicants who are DACA recipients.
About Bioethics for Breakfast: In 2010, Hall, Render, Killian, Heath & Lyman invited the Center for Bioethics and Social Justice to partner on a bioethics seminar series. The Center 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.
The headline in New York Times Magazine reads: “Scientists can now sequence an entire genome overnight.” This is amazing. It took ten years and $3 billion to do the first mapping of the human genome, all three billion base pairs. Today the entire genome of any individual can be mapped for less than $1000. Why is that important? There are preventative, diagnostic, therapeutic, reproductive, and public health reasons. The public health reasons are most evident with the speed with which all the variants of COVID-19 have been mapped.
Having one’s genome mapped can provide an individual with some foreknowledge of health risks to which they might be vulnerable (always keeping in mind environmental factors linked to inherent genetic risks, also keeping in mind the uncertainty and probabilities associated with the vast majority of health risks identified in this way). The risks of medical harm related to genetic ignorance can be reduced. A family of genes referred to as P450 determine whether we are normal, fast, or slow metabolizers of drugs. If we are fast metabolizers, a normal dose will be metabolized too quickly with diminished effectiveness. If we are slow metabolizers, a normal dose will accumulate to potentially life-threatening levels in some cases. Roughly 7% of 1200 FDA approved medications are affected by actionable germline inherited pharmacogenes. Even more importantly, 18% of outpatient U.S. prescriptions (more than four billion per year) are affected by actionable germline pharmacogenomics.
Whole Genome Sequencing (WGS) can assist future possible parents to determine the best reproductive option if they know they represent specific genetic risks to future possible children, e.g., if each were a carrier for a mutated cystic fibrosis gene. In addition, WGS can be used to make accurate diagnoses of very rare disorders that would otherwise require harmful, invasive, diagnostic odysseys. This will be very important in the context of infants in the NICU or children in the PICU.
I remind students that unlike normal medical tests that only yield information about the person who has the test, genetic tests tell us about genetic features of a range of close relatives. Hence, if a genetic test identifies a serious health vulnerability in me, that information can be used to alert other family members of that same vulnerability of which they might otherwise have been ignorant (and which might well be medically manageable before clinical symptoms emerge that might then suggest an irreversible disease process). The therapeutic potential of WGS is most evident today in the case of metastatic cancer. WGS can provide base-pair resolution of an entire tumor genome in a single run, thereby revealing the unique mutations and genomic alterations in the cancer tissue. This will often allow the identification of a targeted cancer therapy, such as imatinib, that targets the distinctive genetic features of a cancer, such as chronic myelogenous leukemia.
In the reproductive context WGS can be used as a non-invasive prenatal screening tool to offer a comprehensive assessment of the fetus. Likewise, WGS could be used at birth as a screening tool to offer a more comprehensive assessment of the infant than the current gene panel, which is only looking for fifty-six rare genetic disorders. This increases the opportunities for timely therapeutic interventions, when available.
Given all these potential therapeutic benefits, what would be the potential ethical challenges? Cost is an issue that raises health care justice problems. Though the sequencing itself costs less than $1000, the analysis, interpretation and counseling bring the cost to $3000 (though in the case of cancer treatment the cost will be $10,000). Few health insurers cover these costs. Should access to WGS then be publicly funded, as a matter of health care justice, perhaps as part of a basic benefit package guaranteed to all? If all 330 million Americans wanted WGS, the cost would be $990 billion. Would that be either a wise or just use of limited health care resources, given all sorts of other unmet health care needs in our society?
One of the main rationales for doing WGS is preventive, i.e., to identify significant health vulnerabilities whose risk of actualization can be reduced by behavioral change. However, the critical question is whether we can be very confident that most patients would commit to the required behavioral changes. Available medical evidence suggests pessimism in this regard, which would imply that WGS with this expectation represented a poor use of social resources. No one believes McDonald’s business plans are threatened by WGS.
If WGS is used to replace current neonatal screening practices, are the privacy rights of newborns put at risk, given later in life genetic vulnerabilities that would be revealed? Would these concerns be mitigated if only medically actionable information were revealed to parents, all other information being set aside until that child reached adulthood? However, what exactly is the scope of “medical actionability?” That child might be vulnerable to some serious genetic disorders much later in life. This would not be a concern for the child as a child. But that child might have older relatives for whom this information would have considerable potential relevance. What are the ethical issues associated with either revealing or failing to reveal that information to potentially “at-risk” relatives?
A very important feature of genetic information gleaned from neonatal WGS (and all WGS for that matter) is that the vast majority of that information will be either of unknown or highly uncertain significance. This will be especially true because of the thousands of mutations that would be part of anyone’s DNA. For parents of a newborn, such uncertainty could be distressing for years and years. However, there is also the uncertainty associated with the responsibilities of primary care physicians in this regard. Who is supposed to have responsibility for tracking changes in genetic knowledge regarding those genetic variations in an individual as medical research advances? And who would be responsible for conveying this new information to parents or adult children, and judging what should be told and when? This is a very complex medical information management problem, relative to which current physician complaints regarding the electronic medical record would fade into insignificance.
Let us assume that WGS is going to be done more thoughtfully and more parsimoniously, such as a diagnostic or therapeutic context where such information would be most useful. What will still happen is the discovery of all sorts of incidental genetic information, sometimes with frightening potential consequences. Imagine this bit of medical dialogue: “Mr. Smith, we were looking for the genetic roots of your heart disease (which we found), but we also discovered your genetic vulnerability to an early-onset form of dementia.” Many patients would not want to know this. How is a physician supposed to know what a patient does or does not want to know in this regard?
Finally, WGS could generate new problems of health care justice. Imagine that the incidental finding in the prior paragraph was a 10% lifetime risk of some serious but treatable cancer. I personally would not be especially distressed by such a finding. However, other individuals might be especially anxious and demand all manner of expensive diagnostic tests on a semi-annual basis to rule out any indications of disease initiation. Would that individual have a just claim to such resources at social expense?
To return to the title of this essay, perhaps the fact that WGS is quick, easy to do, and relatively inexpensive is insufficient reason to justify the promiscuous promulgation at social expense of this technology. Perhaps more thoughtful social and professional deliberation regarding the issues identified in this essay would yield less ethically fraught uses of WGS. Then again there could be the 2030 version of the electronic medical record with room for terabytes of genetic information and thousands of new tabs and subtabs!
Leonard M. Fleck, PhD, is Professor in the Center for Bioethics and Social Justice and the Department of Philosophy 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, May 6, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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In this episode, Senior Academic Specialist Libby Bogdan-Lovis is joined by Dr. Sarah Pletcher, Vice President and Executive Medical Director of Virtual Care at Houston Methodist. Dr. Pletcher shares her telehealth expertise in a conversation that explores the benefits of telehealth for patients and providers, the influence of the COVID-19 pandemic on telehealth adoption, reimbursement models, the future of telehealth, and more.
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.
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.
Malkia Newman, Anti-Stigma Team Supervisor at CNS Healthcare, and Dr. Debra A. Pinals of MDHHS and the University of Michigan presented at the Feb. 25 Bioethics for Breakfast session, offering perspectives and insight on the topic “Mental Health Care Access: Making the Dollars and “Common Sense” Case for Parity.” Bioethics for Breakfast is generously sponsored by Hall, Render, Killian, Heath & Lyman.
People with mental health disabilities face disproportionately high rates of poverty, housing and employment discrimination, and criminalization. The upheaval caused by the coronavirus outbreak has exacerbated these disparities for those disabled prior to the crisis, while exposing more people to trauma, loss, and uncertainty. Considering mental health care from a justice and equity perspective, this session examined the following: 1) What social and ethical challenges are embedded in the current mental health epidemic? 2) How might such challenges be effectively addressed? 3) What community-based models can improve access? 4) What are the cost benefits of equitable treatment vs. cost of untreated mental healthcare in the U.S.?
Malkia Newman addressed the first question above on the social and ethical challenges embedded in the current mental health epidemic. Through sharing her personal life story, Ms. Newman focused on trauma, stigma, and disparities in behavioral healthcare. Ms. Newman defined types of trauma, focusing on inter-generational trauma. She noted that racism and social inequities are now regarded by many as a health crisis, especially in light of the COVID-19 pandemic. Stigma that individuals face can include many layers, and that stigma can exacerbate mental health and substance use disorders. With regard to mental health disparities, she shared that access to mental health care is only one piece—quality treatment, addressing the shortage of qualified providers, and the need for equitable funding of treatment for all individuals is also crucial. Many in the U.S. are facing financial insecurity, which can also exacerbate mental illness and be a barrier to accessing treatment. Bringing forth the idea of resilience, Ms. Newman ended by sharing her hope for the future, that “resilience can spring forth, and resilience can be taught.”
Dr. Debra A. Pinals provided a physician and policymaker perspective, first addressing the question: why is mental health relegated to second tier status in healthcare financing? There is a long history of viewing mental illness, including substance use disorders, as not being “real” illness—blame, stigma, and stereotypes still play a part in this attitude. Stigma “allows the discrimination of someone based on a label.” However, it is very important to understand that these are illnesses that have causes and treatments. COVID-19 may be putting more focus on mental health, and that may be one positive thing to come from the pandemic. What community-based models can improve access? Dr. Pinals discussed the problems with the current crisis system and the involvement of law enforcement when responding to a crisis, and then put forth a new model that would involve a behavioral health response, specially-trained law enforcement as a backup, and many other pieces related to community services and supports. Referencing her paper on crisis services, Dr. Pinals shared that improving access has to be accessible, interconnected, effective, and just. Dr. Pinals also discussed building out Certified Community Behavioral Health Clinics (CCBHCs) in Michigan, and the siloed nature of current services. Dr. Pinals emphasized the need to understand the existing disparities in mental health services, also discussing the prison system, the opioid epidemic, and child welfare impacts.
During the discussion portion, both speakers discussed the need to make space for people’s stories, particularly within the context of policy work. Ms. Newman shared the importance of including both behavioral health professionals and individuals with mental illness during the planning process for policies and programs, such that their input is actively included. Further discussion touched on teletherapy access and programs for youth and families.
Malkia Newman Malkia Newman is Anti-Stigma Team Supervisor at CNS Healthcare. Behavioral health conditions are common in Malkia’s family. Suicidal, unemployed, and homeless, Malkia accessed care at CNS Healthcare in 2004. Once stabilized, she was able to pursue a job with the CNS Healthcare Anti-Stigma Program in 2005. The Peer-Led program challenges stigma and provides community education on a number of different behavioral health topics. Using poetry, singing and other creative expressions, Malkia shows that “hope and recovery is possible.” The program has reached over 100,000 people in Detroit, Lansing, Marquette, MI; Washington, D.C., New York City, Houston, San Antonio, Las Vegas, Chicago, Phoenix, Honolulu, Hawaii, and Nova Scotia, Canada.
Debra A. Pinals, MD Debra A. Pinals, MD, is the Medical Director of Behavioral Health and Forensic Programs for the Michigan Department of Health and Human Services, Director of the Program in Psychiatry, Law, & Ethics, Clinical Professor of Psychiatry at the University of Michigan Medical School, and Clinical Adjunct Professor at the University of Michigan Law School. Dr. Pinals’ roles have included serving as the Assistant Commissioner of Forensic Services as well as the Interim State Medical Director for the Massachusetts Department of Mental Health. She has worked in outpatient and inpatient settings, forensic and correctional facilities, emergency rooms and court clinics, has received public service awards, and has been an expert witness in many cases. She is Board Certified in Psychiatry, Forensic Psychiatry, and Addiction 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.
Technology. It invades every corner of our lives and for the most part improves the quality of life. From typing on a flat panel with a little TV screen attached, to a smartphone enabling users to share with others collected data that lives in the cloud. A CT/X-ray image of a C2 spinal fracture (aka Hangman’s Fracture) taken in the middle of the night at a small Midwestern rural hospital is sent to a West Coast spine surgeon, and within minutes, an expert opinion is returned to that rural hospital. Technology is convenient, pervasive, and unavoidable.
In the past 15 years, discussion and related controversy has taken place about a Radio Frequency Identification Device (RFID) or microchip that can be implanted in human bodies. That chip would contain, store, and update data about us. Might such an implant be a benefit or a risk? Some investors are betting on its appeal. The compound annual growth rate (CAGR) from 2020-2027 of the healthcare microchip is expected to grow by 22% and be valued over $6.4 million by 2027. RFID microchips (herein referred to as microchips) are already used for many things from your credit/debit card, to those efficient logistics used to move your Amazon package.
Getting to the bridge
Implanted microchips are a terrifying idea to some of us—sufficiently frightening to harken images of robots and androids—the stuff of science fiction. For some of us, implanting something foreign in our bodies for the management of big data and convenience is disturbing. Another concern might be the potential breach of privacy and the surveillance of our daily life. If the chip contains medical, personal, social information, and GPS data, could we lose all autonomy? Do we maintain our autonomy if, with sufficient information, we consent to the decision? What will all the information be used or misused for? What if our employer, insurer, or a government entity decides to check on us?
These questions raise other concerns about autonomy. Enough employers considered compulsory microchips for their employees that in 2020, Michigan and several other states introduced and passed bills designed to prevent employers from forcing employees to accept microchip implants. This pre-emptive strike was against a growing technology, utilized perhaps to track safety, productivity and movement. As with many things in the United States, some vulnerable employees with microchips might be targeted, either unintentionally or intentionally, thereby putting them at further economic and social disadvantage.
Some have already crossed the bridge
It is estimated that currently approximately 10,000 people in the world have implanted microchips. Perhaps that doesn’t sound like many, but if investors are hedging their bets correctly, the technology is on its way to widespread adoption. A large number of those “cyborgs” reside in Sweden and employ the technology not for health care reasons, but instead use microchip implants to unlock their car doors, buy a coffee, or swipe into the gym. That rate of chip adoption makes sense in a society like Sweden, which is the second most cashless society (after Canada) in the world.
Many argue that an RFID tag and implanted microchips can increasecybersecurity. Not being able to log into your computer without first swiping into the building and into your office door might offer a level of comforting protection against physical hacking in the workplace. In addition, many in healthcare delivery believe medical mistakes would be greatly reduced and quality of care increased if our medical charts were loaded on microchips, monitoring disease states like heart disease and diabetes, improving management of medications, and reducing surgical mistakes. If, with microchips, first responders or doctors had real-time access to accurate medical information there is potential to save lives in medical emergencies. The HITECH Act—or Health Information Technology for Economic and Clinical Health Act—calls for the interoperability of electronic health information for privacy and safety of the patient. As it is now, it doesn’t make sense for an individual to have different electronic health records in a number of physician offices. If our world were to be efficiently hyperconnected, one can argue that everyday life could be improved and streamlined.
A bridge too far
But would it be? We are covered, watched, followed, and violated through our digital footprint on a daily basis. Perhaps not necessarily with microchips, but pause to consider your actions today. You took your morning walk as public cameras captured your movement down the block, into the convenience store for a cup of coffee, where you used your debit card or smartphone to pay for the transaction, and that transaction was caught on the store camera. You then check your fitness wearable for heart rate, steps, route, and all that other good stuff. Later, you swipe in and out of the building as you stop into your office for a few hours, in and out of several doors, and log on to your computer—accessing various applications in the cloud—all the while answering your email and checking your calendar. Later in the day, you visit your doctor, either in person or via telemedicine, and she enters your ailments, diagnostic tests ordered, and electronic prescriptions into the electronic health record. As you wind down for the evening you make your market list in your favorite grocery store app, use your smart television to access your favorite shows, and access your books on a reading app. All of this is accomplished in the cloud, and on the “grid” in huge databases. Is this trek through the digital world so much different than a microchip that holds your digital footprint? You’ve left a day’s breadcrumb trail on almost every aspect of your life, and not even as consciously as Hansel and Gretel. As for implants in general, clearly Americans accept them, as witnessed by artificial joints, IUDs, cochlear implants – and don’t forget about those implants for hair and breasts.
Over the bridge
The described dilemma is that implanting a chip has the potential to be a violation of rights, yet the chip might equally offer safety and convenience. The implantable microchip is not fully developed and has a long way to go, but the technology is on its way. Microchips today are not sufficiently powerful to collect and communicate big data or to follow us all over the world the way our smartphones do. As with most technologies, the tipping point for implantable chips will come when they become so very useful that they’re simply hard to refuse.
Sabrina Ford, PhD, is an Associate Professor in the Department of Obstetrics, Gynecology and Reproductive Biology and the Institute for Health Policy in the Michigan State University College of Human Medicine. Dr. Ford is also adjunct faculty with the Center for Ethics and Humanities in the Life Sciences.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Tuesday, March 16, 2021. 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.
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.
Assistant Professor Dr. Laura Cabrera is the author of a guest editorial on “The Need for Guidance around Recruitment and Consent Practices in Intracranial Electrophysiology Research,” published in the current issue of AJOB Neuroscience. Dr. Cabrera stresses the importance of the involvement of institutional review boards and funding agencies with regard to study recruitment and participant consent.
The full text is available online via Taylor & Francis Online (MSU Library or other institutional access may be required to view this article).