Tag: Leonard Fleck

If Whole Genome Sequencing is So Cheap and Quick, Why Shouldn’t Everyone Have It Done?

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This post is a part of our Bioethics in the News series

By Leonard M. Fleck, PhD

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.

A technician who has long dark hair and is wearing safety glasses, a white coat, and purple gloves, loads DNA samples into a desktop genomic sequencing machine
Image description:  A technician loads DNA samples into a desktop genomic sequencing machine at the Cancer Genomics Research Laboratory, part of the National Cancer Institute’s Division of Cancer Epidemiology and Genetics (DCEG). Image source: Daniel Sone/National Cancer Institute/Unsplash.

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!

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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.

You must provide your name and email address to leave a comment. Your email address will not be made public.

More Bioethics in the News from Dr. Fleck: Religious Coercion of Physicians: Whose Conscience Is It Anyway? Health Care and Social Justice: Just Take Two Aspirin for Your Tumor If You Cannot Afford Your Cancer Care; Medicare For All: This Is Going to Hurt; Greed Is God: The Divine Right to Avaricious Drug Pricing; Gene Editing: God’s Will or God’s Won’t

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

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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 contributes to perspective on heritable human genome editing published in ‘The CRISPR Journal’

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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.

Dr. Fleck published in ‘Hastings Center Report’ on Black Lives Matter and inequities in the U.S. healthcare system

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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.

Visit the journal’s website for free access to the full text. Dr. Fleck is one of more than 200 Hastings Center Fellows.

Dr. Fleck presents on precision medicine at international virtual symposium

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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.

Commentary from Dr. Fleck published in ‘Cambridge Quarterly of Healthcare Ethics’

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Center Acting Director and Professor Dr. Leonard Fleck has a commentary in the July 2020 issue of Cambridge Quarterly of Healthcare Ethics. The commentary is titled “Medical Ethics: A Distinctive Species of Ethics.”

Dr. Fleck writes, “Like the sciences, medical ethics has evolved with its own distinctive ethical norms and understandings as a result of emerging technologies (ICUs, organ transplantation, preimplantation genetic diagnosis, and so on) as well as chancing political, economic, and organizational structures and practices relevant to health care.”

The full text is available online via Cambridge Core (MSU Library or other institutional access may be required to view this article).

Dr. Fleck published in April ‘Journal of Medical Ethics’

Leonard Fleck photoCenter Acting Director and Professor Dr. Leonard Fleck is the author of an article published in the April 2020 issue of the Journal of Medical Ethics. “Just caring: screening needs limits” is in response to “Arrogance of ‘but all you need is a good index finger’: A narrative ethics exploration of lack of universal funding of PSA screening in Canada” by Dr. Jeff Nisker.

Abstract: This personal narrative tugs at the heart strings. However, personal narratives are not sufficient to justify public funding for any screening policy. We have to take seriously the ‘just caring’ problem. We have only limited resources to meet virtually unlimited health care needs. No doubt, screening tests often save lives. The author wants public funding for prostate-specific antigen screening for prostate cancer. However, why only prostate cancer? Numerous cancers at various stages can be screened for. Are all of them equally deserving of public funding? What about screening for a very long list of other life-threatening medical disorders? There is nothing ethically special about cancer. Where does the money come from to pay for all these screening tests? Do we reduce expensive life-prolonging care for patients in late-stage diseases? Ultimately, a balance must be struck between saving statistical lives through screening and saving identifiable lives in the intensive care unit. Achieving a just balance requires rational democratic deliberation as justification for these choices, not personal narratives.

The full text is available online via BMJ Journals (MSU Library or other institutional access may be required to view this article).

Listen: Why I Left the U.S. for My Surgical Procedure

No Easy Answers in Bioethics logoNo Easy Answers in Bioethics Episode 21

What would you do if you needed surgery, but seeking care would mean $25,000 or more in medical debt? Would you consider traveling to another country to receive the same surgery at a fraction of that cost? Would you put off seeking care entirely, until it became an emergency situation?

These questions related to access to care, health insurance, and medical tourism are explored in this episode, which features Center for Ethics and Humanities in the Life Sciences faculty members Len Fleck and Larissa Fluegel. Dr. Fluegel, a clinician born and raised in the Dominican Republic, shares her personal experience of needing gallbladder surgery, and the reasons why she traveled from Michigan to the Dominican Republic to receive that surgery. It may not be surprising that the main reason was cost. Discussing the healthcare systems in both countries, Drs. Fleck and Fluegel explore the challenges that under- and uninsured individuals in the U.S. face when seeking care.

Ways to Listen

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. Each month Center for Ethics 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.

Religious Coercion of Physicians: Whose Conscience Is It Anyway?

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Leonard Fleck, PhD

Neil Mahoney is 64 years old and has a terminal cancer with a predicted life expectancy of 4-16 months. He lives in Colorado, a state that approved an aid-in-dying law in 2016. His physician is Dr. Barbara Morris, 65, a geriatrician whom he has asked to provide him with the drugs needed to end his life. She has agreed to do just that.

However, Dr. Morris works for the Centura Health Corporation, a Catholic-Adventist hospital system. Dr. Morris was fired from her position when it became public knowledge that she was willing to help Mr. Mahoney to end his life. We should note that she had no intention of doing this within the walls of the hospital or any of its facilities. She would accomplish this in the privacy of Mr. Mahoney’s home.

Moral-Dilemma-Ahead-road-sign
Image description: a yellow road sign reads “MORAL DILEMMA AHEAD” in bold black lettering. Image by Liz McDaniel.

In justifying its firing, the hospital CEO said Dr. Morris could be fired for “encouraging” the patient to pursue aid-in-dying, even if she never actually provided or assisted in any other way his accessing the drugs he requested. The CEO cited as a basis for this position the Ethical and Religious Directives for Catholic Health Care Services. The directives state that Catholic health care providers (which include everyone working in the institution, whatever their religious commitments or lack thereof) “may never condone or participate in euthanasia or assisted suicide in any way” (emphasis mine). Instead, “patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.” Alternatively, the care of that patient should be transferred to another provider, presumably one willing to respect the choice of someone like Mr. Mahoney.

It should be obvious that there is something ethically incongruous about this position. Imagine my walking into a Catholic gun shop in a horribly depressed state of mind and asking the owner to sell me a gun so that I could blow my brains out. He expresses compassion for my awful life circumstances, urges me to seek psychiatric care, then explains that as a Catholic he could not sell me that gun, knowing my intention. Having said all that, he informs me that a mile away is another gun store owned by an atheist who would have no qualms about selling me that gun. Given his religious commitments, would sharing such information be ethically justified?

Let’s translate the answer to that rhetorical question into Mr. Mahoney’s situation. He went to that hospital to get care for his cancer. He did not go there to receive aid-in-dying. However, imagine this situation. His cancer treatment at the hospital is failing miserably. At this point he does request aid-in-dying since he has no interest in redemptive suffering, either for himself or anyone else.

The hospital could transfer him to another hospital where his wish could be fulfilled. However, that sounds like the situation of our Catholic gun shop owner. Alternatively, they could explain to him that it would be contrary to their corporate conscience to effect that transfer. In addition, they believe several doses of redemptive suffering would be therapeutic for his spiritual well-being.

Mr. Mahoney could retain an attorney who would point out that Mr. Mahoney has the legal right to leave the hospital against both medical and spiritual advice. Other patients, however, who might be in much worse medical circumstances (unable to be transferred) would not be able to exercise that right or the right to access aid-in-dying. That brings us to the crux of this essay.

Whose conscience should prevail in this situation? If a physician or other health professional were asked to participate in some way in a request for aid-in-dying, and if such participation were contrary to their deeply held religious or ethical beliefs, we (political authorities in a liberal, pluralistic, tolerant, democratic society) would respect those beliefs and allow them to avoid participating. This is equal and reciprocal moral respect. What would that require if Mr. Mahoney were this latter hypothetical patient stuck in that hospital? Perhaps that would require allowing a physician who was not attached to the hospital to enter the hospital for purposes of providing aid-in-dying. It is hard to imagine Centura agreeing to that.

The alternative would be to allow a member of their medical staff who believed providing aid-in-dying to a patient in these circumstances was both ethically permissible and obligatory to do just that. However, Centura has made clear that no member of that institution would be allowed to do that, thereby imposing their conscientious beliefs on hundreds of staff who might not agree with that belief. This seems contrary to the notion of reciprocal moral respect.

Centura would expect that Catholic physicians in secular hospitals would be allowed to refrain from participating in any act of aid-in-dying. Why not allow non-Catholic physicians (or liberal Catholic physicians) in Catholic hospitals to act in accord with their sense of compassionate conscientiousness in Mr. Mahoney-like situations? There is a political and ethical contradiction here: the hospital is invoking our liberal pluralistic political heritage to secure protection for their conscientious beliefs, but denying that same protection to staff and patients within their walls who disagree with that religious commitment.

The hospital might portray itself as a “religious institution,” though this is misleading at best. It is not a church whose membership is comprised of individuals who freely choose to endorse a specific faith perspective. Hospitals, whether having any religious affiliation or not, are public institutions accepting public money (Medicare, Medicaid, etc.) to care for patients with or without any religious faith. People seek health care in those institutions, not spiritual guidance, and certainly not spiritual coercion.

Noteworthy in today’s health care environment is the acquisition of smaller hospitals by larger hospital chains, including Catholic hospitals absorbing secular hospitals and imposing a Catholic identity on them. Almost 20% of all hospital beds in the United States today are under Catholic auspices. Beyond that, these hospital chains are buying up all sorts of medical practices as a way of assuring a steady (and profitable) stream of patients and patient revenue. In effect, patients are being drafted (unbeknownst to themselves) into a religious environment, potentially to become soldiers in the cause of redemptive suffering.

More problematic, as noted earlier, was that Dr. Morris was going to provide aid-in-dying in the privacy of Mr. Mahoney’s home. Mr. Mahoney was likely not a saint. Still, it is unconscionable that he would have to undergo redemptive suffering for the sake of an institution to which he owed no allegiance to satisfy the conscience of that institution and its CEO.

Finally, a Canadian Catholic hospital was recently legally obligated to make available aid-in-dying to patients in accord with Canadian law. That service would be provided in a building adjacent to the hospital and owned by the hospital. Physicians employed by the hospital would be free to provide that service. This, I conclude, is a reasonable compromise that reflects mutual moral respect regarding an ethically complex situation rather than uncompromising redemptive religious righteousness. This also represents the equal political respect required for the peaceful functioning of a liberal pluralistic society and health care system.

Leonard Fleck photoLeonard M. Fleck, PhD, is Acting Director and Professor in the Center for Ethics and Humanities in the Life Sciences and Professor in 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, February 6, 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.

More Bioethics in the News from Dr. Fleck: Health Care and Social Justice: Just Take Two Aspirin for Your Tumor If You Cannot Afford Your Cancer Care; Medicare For All: This Is Going to Hurt; Greed Is God: The Divine Right to Avaricious Drug Pricing; Gene Editing: God’s Will or God’s Won’t

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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.