Dr. Kelly-Blake presents at Michigan nutrition and dietetics conference

Photo of Karen Kelly-Blake

Center Assistant Director and Associate Professor Karen Kelly-Blake, PhD, recently presented at the Michigan Academy of Nutrition and Dietetics 2021 Virtual Spring Conference. Dr. Kelly-Blake presented on “Dietitian and Client Base Mismatch: Are There Ethical Implications?”

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.

Dr. Fleck presents on public funding for whole genome sequencing at International Bioethics Retreat

Leonard Fleck photo

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.

Dr. Fleck presents on precision medicine at international virtual symposium

Leonard Fleck photo

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.

Brittany Ajegba presents at Diversity in Medicine Conference

In early March, College of Human Medicine student Brittany Ajegba presented at the second annual Diversity in Medicine Conference at the University of Michigan in Ann Arbor. Ajegba presented a poster titled “Rationales for expanding minority physician representation in the workforce: a scoping review.” The poster presented the work of a multi-institution research team comprised of Karen Kelly-Blake (MSU), Libby Bogdan-Lovis (MSU), Nanibaa’ Garrison (UCLA), Faith Fletcher (University of Alabama at Birmingham), Brittany Ajegba (MSU), Nichole Smith (University of Chicago), and Morgan Brafford (Walden University). The team’s scoping review of the same name was published in the September 2018 issue of Medical Education.

Ajegba shared her experience on attending: “I was so happy I was able to attend and present at the [conference]. While I got to present on our physician-patient racial/ethnic concordance research, it was great to see what researchers from around the country are doing to address underrepresentation in medicine. Being from the area, it was nice to reconnect with future colleagues and to see what work was being done around various topics of diversity in medicine that included but was not limited to: unconscious bias projects, pipeline programs, LGBTQ+ healthcare, and much more.”

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Image description: Brittany Ajegba smiles next to her poster that is pinned on a display board at the Diversity in Medicine Conference. Photo courtesy of Brittany Ajegba.

The team’s poster presented findings of their scoping review of the 2000-2015 literature on strategies for and approaches to expanding underrepresented minority (URM) representation in medicine, “which reveals a repetitive, amplifying message of URM physician service commitment to vulnerable populations in medically underserved communities. Such message repetition reinforces policies and practices that might limit the full scope of URM practice, research and leadership opportunities in medicine. Cross-nationally, service commitment and patient-physician concordance benefits admittedly respond to recognized societal need, yet there is an associated risk for instrumentally singling out members of URMs to fulfill that need. Additionally, the proceedings of a 2001 US Institute of Medicine symposium warned against creating a deterministic expectation that URM physicians provide care to minority populations.”

Listen to Episode 6 of our podcast series No Easy Answers in Bioethics, featuring Libby Bogdan-Lovis and Dr. Karen Kelly-Blake, to learn more about this ongoing research.

Dr. Laura Cabrera presents at 1st International Bioethics Congress

Laura Cabrera photoCenter for Ethics Assistant Professor Dr. Laura Cabrera traveled to Mexico City earlier this month to give a keynote presentation at the 1st International Bioethics Congress: Knowledge, Law and New Technologies in Health.

Dr. Cabrera’s presentation, “Neuroethical Aspects of Psychiatric Neurosurgery,” gave an overview of her work as part of the NEURON Consortium with Dr. Judy Illes (University of British Columbia) on media and public perceptions around psychiatric neurosurgery. The congress had several parallel tracks touching on a variety of important bioethics topics, including neuroethics, nanomedicine, clinical ethics, research ethics, biolaw, medical devices regulation, and translational medicine.

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Image description: Dr. Laura Cabrera stands while presenting her talk to attendees at the 1st International Bioethics Congress in Mexico City. Photo courtesy of Laura Cabrera.

Dr. Fleck presents at 21st Annual ASBH Conference

Leonard Fleck photoCenter Acting Director and Professor Dr. Leonard Fleck recently attended and presented at the 21st American Society for Bioethics and Humanities Annual Conference, held in Pittsburgh, PA. Dr. Fleck participated in a session titled “Ageism in History, Moral Thought, and Healthcare Decisions,” presenting “Just Caring: In Defense of Fair Innings, Not Extra Innings, for the Elderly.”

Dr. Fleck has provided a summary of his presentation below.

A just and caring society has as its first obligation to assure access to needed and effective health care for all so that, if medically possible, all have an opportunity to achieve a normal life span (their fair innings). It is wrong to deny the elderly (over age 70) access at social cost to needed and effective health care simply because they are old or very old. But it is equally morally objectionable for the elderly to demand unlimited access at social cost to any medical intervention that offers them some opportunity (no matter how small) for some extended life or somewhat improved quality of life. Those are unjust demands by the elderly and cannot be rightly criticized for being ageist.

In the real world, the non-elderly do not wish to pay unlimited sums (payroll taxes) to underwrite the costs of the current generation of the elderly. But it is also the case that the current generation of the non-elderly do not wish to pay more in taxes to support the even greater health care needs of their own future possible elderly selves.

The clearest example I have of “pure” age-based rationing is one of the recommendations we made to the governor in the event of a pandemic in the vicinity of the “Spanish flu of 1918.” We said if there was a shortage of vents/ ICU beds or other such life-saving interventions, no one over age 70 would have access to those interventions. I would not want my grandkids or your grandkids to die so that I could live to my mid-80s or beyond.

There is a new version of a totally implantable artificial heart (TIAH), expected to be in clinical trials in early 2020. This would promise extra years of life to the 500,000 patients each year in the U.S. in late-stage heart failure. The cost per person would be more than $400,000. Many of these patients will be in their 80s or beyond. If all 500,000 patients had an equal just claim to a TIAH, that would add $200 billion per year to the cost of health care. Could we agree through public deliberation no one over age 80 would be eligible for this heart at social expense?

Iibrutinib is for Chronic Lymphocytic Leukemia at a cost of $156,000 per person per year. These patients are mostly older; median onset at age 71. Ibrutinib will fail some at year 2, year 4, year 6, year 8. Then patients either die or (today) have the option of CAR T-cell immunotherapy at a front-end cost of $475,000. (And there are hundreds of thousands of dollars in additional costs per patient for those who experience cytokine release syndrome). 30% of these patients given CAR T-cell therapy will die in less than a year. If we had a biomarker that could identify those patients before the fact, would it be just to still allow access to CAR T-cell therapy if a patient were less than 75, but deny it to patients over age 75 who were identified with 90% probability of being in that 30% group? These are challenges for democratic deliberation.

Dr. Stahl presents on women’s pain panel at Conference on Medicine & Religion

Devan Stahl photoCenter Assistant Professor Dr. Devan Stahl recently attended the 2019 Conference on Medicine & Religion, held in Durham, NC. Dr. Stahl was part of a panel titled “”Ask Me about My Uterus:” Theological Responses to Women’s Pain in Contemporary Western Medicine.”

The three panelists, all women living with chronic pain or chronic illness, discussed their experiences dealing with pain, and the theological resources that have helped with that endeavor. Dr. Stahl discussed how the Desert Mothers provide models for understanding and handling pain in illness. Overall, the panel considered “how a theological re- narration of chronic pain might offer insight into the significance of women’s pain as well as resources for meaning-making in the midst of pain.”

Read more about this panel on the conference website.

Dr. Stahl presents at Society for Christian Ethics annual meeting

Devan Stahl photoOn January 4, Center Assistant Professor Dr. Devan Stahl gave a presentation at the Society for Christian Ethics annual meeting in Louisville, KY titled “The Prophetic Challenge of Disability Art.”

For persons with chronic illness and disability, medical images can come to represent their stigmatized “otherness.” A growing group of artists, however, are transforming their medical images into works of visual art, which better represent their lived experience and challenge viewers to see the disability and illness differently. Dr. Stahl showed how disability art encourages a new ethic of communion in which embodied vulnerabilities are shared, celebrated, and reoriented toward the ground of being.

Learn more about Dr. Stahl’s work with medical images and visual art.

Center faculty present at 20th annual American Society for Bioethics and Humanities conference

ASBH logo blueCenter faculty members Dr. Len Fleck and Dr. Devan Stahl recently presented at the 20th annual American Society for Bioethics and Humanities (ASBH) conference, held October 18-21 in Anaheim, CA.

Leonard Fleck photoDr. Fleck presented on “Parsimonious Precision Medicine: Wicked Problems.” The phrase “precision medicine” refers to targeted cancer therapies and immunotherapies that are aimed at defeating metastatic cancers with specific genetic signatures. There are more than ninety such FDA approved therapies, all of which have costs of more than $100,000 per year with some costing as much as $475,000 (CAR-T cell therapies). To date, none are curative. On the contrary, for the vast majority of patients gains in life expectancy are measurable in weeks or months, not years. These results suggest that for a just and caring society with limited resources to meet virtually unlimited health care needs, we ought to be more parsimonious in how we use these drugs and who we choose to treat.

The key point of the presentation was that whether we choose to be parsimonious in our use of targeted therapies or not, we will generate what the literature has come to describe as “wicked problems” (ethically, economically, and politically speaking). A “wicked” problem is essentially a problem for which every proposed solution (including doing nothing) generates even more problems that are equally, or more, challenging.

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Dr. Stahl gave two panel presentations at ASBH this year. The first, “Theories of Identity and the Problem of Precedent Autonomy,” explored the ethical tensions that arise when patients in disordered states of consciousness appear to have current preferences that contradict their prior wishes. The panelists, including Dr. John Banja (Emory University) and Dr. Nancy Jecker (University of Washington), discussed the limits of philosophical analysis and theory regarding the status of precedent autonomy.

In her second presentation, Dr. Stahl was joined by Darian Goldin Stahl (Concordia University) and Dr. Jeffrey Bishop (Saint Louis University) to discuss their latest book Imaging and Imagining Illness, which explores the effect of medical imagining on patients and ways medical images can be transformed through art and philosophy.

Dr. Fleck facilitates occupational and environmental medicine workshop at Michigan conference

Leonard Fleck photoCenter Acting Director and Professor Dr. Len Fleck held a workshop at the annual Michigan Occupational Health Conference in Grand Rapids, MI on September 28. Dr. Fleck’s workshop was on “Occupational and Environmental Medicine: Ethical Challenges.”

The primary ethical challenge for physicians in occupational medicine is the dual loyalty challenge. More specifically, they are employed by (or contracting with) some large company to address health issues related to employees. In the workshop itself, attendees considered several concrete examples of this challenge, in particular, what might be regarded as emerging challenges related to emerging genetic technologies. A concern in many workplace situations that involve numerous chemicals is the health and safety of workers. Some workers may be susceptible to serious medical disorders related to such exposures for genetic reasons, but the required exposure might have to be over a prolonged period of time. An employer might offer to pay for whole genome sequencing to identify workers with such risks, in part for morally sound reasons (not wanting to cause avoidable harm to these workers), in part for more selfish economic reasons (not wanting to be at risk for large future health costs). An occupational physician would receive that information, and be expected to pass it along to an employer (who paid for it).

However, there are privacy rights that seem to be at risk; there are also issues of respect for patient autonomy. One worker, in the example Dr. Fleck gave to the audience, was found to be at 30% increased risk for colorectal cancer after ten years of exposure to a specific chemical. He did not want the physician to report that genetic vulnerability to his employer for fear of losing his job. He was willing to accept the risk. What is the right thing to do, all things considered? Several physicians said their responsibility extended only to determining “fitness to work.” And this worker was not going to drop dead next month or next year as a result of this vulnerability. So they would not report that result. Others asked about the details of the agreement with the company. Should the occupational physician strongly counsel this patient? One response was that this was the job of the primary care physician that this individual might have. In brief, discussion was vigorous and interesting.