Leonard Fleck, PhD, recently traveled to Lisbon, Portugal to present the keynote lecture at the conference “Precision Medicine Conference: Ethical and Legal Issues.” This international conference was held at Universidade Nova de Lisboa and sponsored by the Erasmus University School of Health Policy and Management.
Fleck’s address on the ethical and legal issues of precision medicine is available to watch on YouTube, along with other content from the conference. Fleck’s address begins around the 11-minute mark of the video.
An audience of in-person and virtual conference attendees included lawyers, policy expects, and medical professionals. Many countries were represented among attendees, including the Netherlands, Spain, Portugal, Lithuania, Serbia, Italy, France, and Germany. This engaged audience was, in one sense, familiar to Fleck, who has long been collaborating with European researchers, including multiple groups from Erasmus University.
Fleck shared what he describes as a “wow” moment from his presentation:
“I had included a video link to an ad for the drug Opdivo (nivolumab) for non-small cell lung cancer. There are several variants of this ad, all with a common theme: “A Chance to Live Longer.” These ads have been shown (I am sure) thousands of times on U.S. TV. They clearly give the misleading impression that anyone taking this drug can expect significant life-prolongation (leaving it to the viewer’s imagination what that length of time might be). Most of the audience gasped and laughed as they watched the ad. Keep in mind that only in the U.S. and New Zealand may such drug ads appear on TV. So, this was a somewhat startling phenomenon for this audience.”
An hour of discussion followed Fleck’s lecture, exploring the complex questions related to drug costs and public policy. At the heart of these questions is Fleck’s definition of the “wicked problem”: no matter what choices we make, we are at risk of creating new problems that are just as bad, ethically and politically, as the allocation problem we are trying to solve.
Fleck said, “The other concept that was new to most people in the audience was “onco-exceptionalism,” the idea that cancer was morally special and deserving of something close to unlimited resources to provide any degree of benefit from treatment, no matter how small the benefit or how costly the benefit might be.”
Keynote lecture description
Metastatic cancer and costly precision medicines generate highly complex problems of health care justice. Targeted cancer therapies yield only very marginal gains in life expectancy for most patients at a very high cost, thereby threatening the just allocation of limited healthcare resources. Philosophers have high hopes for the utility of their theories of justice in addressing resource allocation challenges; however, none of these theories adequately address the “wicked” ethical problems that have resulted from these targeted therapies.
What we need instead, bioethicist Leonard M. Fleck argues, is a political conception of health care justice, following Rawls, and a fair and inclusive process of rational democratic deliberation governed by public reason. His account assumes that we have only limited healthcare resources to meet unlimited healthcare needs generated by emerging medical technologies. The primary ethical and political virtue of rational democratic deliberation is allowing citizens to fashion autonomously shared understandings of how to fairly address the complex problems of healthcare justice generated by precision medicine. While ideally just outcomes are a moral and political impossibility, “wicked” problems can metastasize if rationing decisions are made invisibly—in ways effectively hidden from those affected by those decisions. As Fleck demonstrates, a fair and inclusive process of democratic deliberation could make these “wicked” problems visible, and subject, to public reason.
By Liz McDaniel