Leonard Fleck: Bioethics and an exercise in civic engagement
Leonard Fleck, a professor of philosophy and a faculty member in MSU’s Center for Ethics and Humanities in the Life Sciences, is among the foremost experts on the ethical dimensions of American health care.
Should the United States permit the use of CRISPR-cas9, a gene editing technology, to edit the genomes of eight-cell embryos that would otherwise be born with a serious genetic disorder, such as cystic fibrosis?
Should employers with religious objections to artificial contraception be permitted to exclude insurance coverage for those contraceptives, even though one provision of the Affordable Care Act requires that such coverage be provided at no out-of-pocket cost to all employees (whether or not they share an employer’s beliefs)?
Recall the case of Charlie Gard in the United Kingdom a year ago. Charlie was an infant with an extremely rare, deadly mitochondrial disorder for which there was no medical treatment. After nine months of hospitalization his British physicians concluded that he should only be provided with comfort care and allowed to die.
His parents, however, contacted a physician at Columbia who claimed to have an experimental therapy that might help Charlie, though it had never been tried on anyone with his very specific disorder. His parents wanted to take Charlie to the U.S., contrary to the judgment of Charlie’s physicians who regarded this as contrary to his best interests.
Should those parents ultimately have the right to decide what they judge to be in Charlie’s best interest? Can parents make mistakes in this regard that physicians are ethically and legally obligated to resist?
We are entering the era of precision medicine. We have $150,000 cancer drugs designed to match the genetic signature of metastatic cancers. Most of these drugs yield only extra weeks or months of life, though a small number of patients will gain extra years. We have CAR T-cell immunotherapy for patients with refractive B-cell lymphoma at a front-end cost of $475,000. Roughly 30 percent of these patients will survive less than a year.
Should all individuals with metastatic cancer have assured access to these therapies through some governmental program that would underwrite these costs rather than allowing individual ability to pay or private insurance to determine access? What is the right policy for a society that aspires to be just and caring?
The field of bioethics has become enormously more complex and more ethically and politically challenging since I entered the field in 1972, as the questions above make clear. More importantly, these questions, as both ethical and policy issues, are precipitating increased social divisiveness with vicious irrational rhetoric and tribal media sites that isolate individuals from thoughtful, respectful engagement with those with whom they disagree.
This state of affairs threatens to undermine our democratic institutions more than a wily Putin could ever hope to accomplish. What we need are social institutions and social practices wherein controversial bioethical issues can be respectfully engaged by individuals with differing points of view.
For the past seven years the Center for Ethics and Humanities in the Life Sciences has sponsored such an institution (with the generous support of the law firm of Hall, Render, Killian, Heath, and Lyman and Brian Bauer at that firm) under the title “Bioethics for Breakfast.” We do this four times a year at the University Club.
We invite a diverse group of community leaders in the health care field or related policy areas to these breakfasts. We typically have two speakers with differing perspectives, who each have 15 minutes to present and defend their point of view, allowing at least 30 minutes for members of the audience to engage with the speakers and with one another.
Among the topics we have addressed are personal responsibility for health (“Whose Pleasure, Whose Poison, Whose Purse?”), direct-to-consumer health care (“Who really benefits?”), protecting collegiate football players and consolidation in the health care system.
We have never had anything but respectful conversation regarding any of these topics. This is the sort of civic engagement that is at the core of Michigan State University’s mission. It is also the lifeblood of vibrant democratic institutions and liberal societies.