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. Tomlinson and co-authors published in ‘European Journal of Human Genetics’

Tom Tomlinson photoCenter Director and Professor Dr. Tom Tomlinson is first author of the article “Effect of deliberation on the public’s attitudes toward consent policies for biobank research,” published in the February 2018 issue of the European Journal of Human Genetics. The work of Dr. Tomlinson and co-authors Raymond G. De Vries, H. Myra Kim, Linda Gordon, Kerry A. Ryan, Chris D. Krenz, Scott Jewell, and Scott Y. H. Kim was supported by the NIH-funded project “Public Preferences for Addressing Donors’ Moral Concerns about Biobank Research.”

Abstract: In this study, we evaluate the effect of education and deliberation on the willingness of members of the public to donate tissue to biobank research and on their attitudes regarding various biobank consent policies. Participants were randomly assigned to a democratic deliberation (DD) group, an education group that received only written materials, and a control group. Participants completed a survey before the deliberation and two surveys post-deliberation: one on (or just after) the deliberation day, and one 4 weeks later. Subjects were asked to rate 5 biobank consent policies as acceptable (or not) and to identify the best and worst policies. Analyses compared acceptability of different policy options and changes in attitudes across the three groups. After deliberation, subjects in the DD group were less likely to find broad consent (defined here as consent for the use of donations in an unspecified range of future research studies, subject to content and process restrictions) and study-by-study consent acceptable. The DD group was also significantly less likely to endorse broad consent as the best policy (OR = 0.34), and more likely to prefer alternative consent options. These results raise ethical challenges to the current widespread reliance on broad consent in biobank research, but do not support study-by-study consent.

The full text is available online through Springer Nature (MSU Library or other institutional access may be required to view this article).