This month the Center was proud to officially announce its new name: Center for Bioethics and Social Justice. This name change reflects an updated mission with a focus on social justice-oriented bioethics. This episode features a conversation between Director Sean Valles, PhD, and Assistant Director Karen Kelly-Blake, PhD. Together they discuss moving forward in the bioethics space, what engaging in service to the people means to them, and the important work to be done to a create a healthier and more socially just world. They also explore questions related to the practical application of bioethics, and the challenge of preparing medical students for clinical practice in an inequitable world.
This episode was produced and edited by Liz McDaniel in the Center for Bioethics and Social Justice. 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 Bioethics and Social Justice in the Michigan State University College of Human Medicine. Center 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.
The MSU Center for Ethics and Humanities in the Life Sciences is proud to announce its new name: Center for Bioethics and Social Justice. This name change as of April 1 reflects an updated mission with a focus on social justice-oriented bioethics. The Center has a vision of a health system that is compassionate, respectful, and responsive to people’s needs, so that equity, inclusion, and social justice are available to all.
Director Sean A. Valles, PhD
“Without an orientation, bioethics has no built-in real-world goals; it is merely a field of study. Doing social justice-oriented bioethics means we have a goal—advancing social justice in the real world with meaningful applications—as the north star for our journey as an institution,” said Center Director Sean A. Valles, PhD.
The updated name and mission follow the appointment of Valles as director earlier this year, along with the promotion of Karen Kelly-Blake, PhD, to assistant director.
“One key piece of the new name and mission is a rethinking and a recommitting of our identity,” said Valles. “The Center aims to be a hub for collaborations and conversations around the relationship between social justice and health. To do that, we will actively seek to engage with our college and university colleagues, local communities, and organizations in order to learn their concerns about the ways our society makes it hard to live a healthy life, and to begin trying to help.”
Assistant Director Karen Kelly-Blake, PhD
The Center’s mission is to educate health professionals with skills, knowledge, and attitudes necessary to contribute to a world in which health practices are equitable, inclusive, and bolstered by conditions of social justice; to research the nature of bioethics and enhance its applications to the pursuit of equitable, inclusive, and just healthy societies; and to engage researchers, clinicians, policymakers, and communities around shared interests in the attainment of a healthier and more just world.
“Building bridges among MSU experts and outward to communities is of value to everyone involved,” added Valles.
The Center began in 1977 with the formation of the Medical Humanities Program. In 1988, the program became the Center for Ethics and Humanities in the Life Sciences. Faculty in the Center are committed to teaching medical students in the College of Human Medicine and developing social context of clinical decisions content for the Shared Discovery Curriculum. Center faculty are also committed to research, scholarship, and public outreach and education—all working toward the goal of creating a more just world.
Visit the Center’s website to learn more about its faculty and outreach activities, such as public seminars, podcast episodes, and monthly blog posts that explore timely bioethics topics.
Dr. Stanley Goldfarb is the former Associate Dean of Curriculum at the University of Pennsylvania Perelman School of Medicine. In a recent Wall Street Journalopinion piece, “Take Two Aspirin and Call Me by My Pronouns,” he complained that curricula in medical schools “are increasingly focused on social justice rather than treating illness.” He goes on to say, “A new wave of educational specialists is increasingly influencing medical education. They emphasize ‘social justice’ that is related to health care only tangentially.” Really? Only tangentially?
Readers will recall Dr. Mona Hanna-Attisha, a pediatrician in Flint, Michigan. She had discovered elevated lead levels in many of her pediatric patients. She could have “stayed in her lane,” provided chelation therapy, hoped for the best, and gone home for dinner. If this is what we would have taught her during her medical education, we would have been complicit in suborning a major injustice.
Dr. Hanna-Attisha did the necessary background research, discovered that public officials had switched the source of Flint’s drinking water to save money, which, in turn, resulted in lead being leached into the drinking water. She brought her case to the media and vigorously advocated (successfully) for correcting this health hazard. She did this for the sake of the children in Flint, many not yet born. This was not tangential to her role as a physician; this was integral and essential. This was a matter of social justice. This was part of her medical education in the College of Human Medicine.
The practice of medicine today is suffused with social justice challenges. As we explain to our first-year medical students, the clinic is not an island of “pure caring,” isolated from the injustices that are pervasive in our health care system and governing policies. Those injustices frequently seep into clinical practice through the hands of physicians who, no doubt, see themselves as just and caring practitioners. This may sound like hyperbole, but I ask you to consider the evidence.
For the past forty years the dominant demand in health policy has been for health care cost containment. I will remind the reader that last year in the United States we spent $3.65 trillion on health care, roughly 18% of our GDP, compared to 11% of GDP in most European nations. If we ask who is responsible for spending more than 70% of those dollars, the short answer is that physicians in the clinic are the responsible agents. Physicians decide whether a patient needs surgery, which drugs to prescribe, what diagnostic tests are necessary, how much home care is needed, and so on. Consequently, if a focal point is needed for controlling health care costs, it will be physicians.
Note that cost control can be a matter of justice or injustice. In either case, physicians will have to be mindful of the justice-relevant consequences of their diagnostic or therapeutic choices. In the 1990s a number of managed care plans used “at risk” reimbursement to elicit more cost-conscious physician clinical behavior. In some cases, as much as 30% of a physician’s income could be “at risk” if they ordered too many tests. They could also earn 30% bonuses if they were especially stingy in their use of tests. Patients knew nothing of these arrangements. Income risks and opportunities such as those could readily shape physician behavior in ways that were less than just. Whether physician judgment in these circumstances would be corrupted would depend upon whether in their medical education they had had the opportunity to reflect upon such future challenges (as opposed to thoughtlessly accepting such practices as “this is the way medicine is practiced today.”)
Putting physician income at risk to control costs related to patient care is crude and obvious. More problematic are the subtle and invisible ways in which physicians control costs justly or unjustly. For example, a patient demands an MRI to rule out brain cancer when a physician is medically certain these are tension headaches. But the physician authorizes the MRI because “insurance will pay.”
If thousands of physicians are indifferent to authorizing such unnecessary care, then the costs of health insurance to employers increase. For employers at the economic margins, that cost increase may mean dropping health insurance as a benefit, thereby adding those employees to the ranks of the uninsured. From the perspective of any individual physician, this is a very remote, invisible consequence of their decisions that creates an injustice. Medical students need to know this to practice medicine justly.
Other employers will change insurance coverage to reduce their costs. They will require their employees to accept insurance with $5000 front-end deductibles. Financially less well-off workers will deny themselves that unnecessary MRI (no injustice there), but they will also deny themselves medically necessary diagnostic procedures (sometimes with deadly consequences) by not even walking into a physician’s office. Why, physicians might ask, should they as physicians be responsible for those bad decisions by patients; there was nothing to diagnose in the examining room. But maybe there was something to diagnose in society? This is sounding a bit more like the situation in Flint. Non-physicians made cost control decisions but counted on physicians to see such decisions as “merely tangential” to the practice of medicine, nothing that should concern them.
Precision medicine has generated more than 90 FDA approved genetically-targeted cancer drugs with annual costs of more than $100,000. These drugs are used with patients with metastatic disease. The vast majority of these patients will gain no more than extra months of life from these drugs, not extra years (though clever media campaigns create a very different impression). For most workers, their health plan will require a 20-30% co-pay for these drugs, which is unaffordable for most workers. Financially well-off managers and executives will be able to afford those co-pays, which means that workers who could not afford the co-pays will have contributed through their premiums to subsidizing that other 70-80% for the well-off. Is that fair? Is that just?
Should physicians caring for these patients silently acquiesce to these insurance arrangements as “too tangential” to medical practice, too far removed from the clinic? Should we, as teachers of future physicians, also silently acquiesce so that more curricular time can be allocated to understanding the mechanisms of action of the next 90 FDA approved targeted cancer therapies? WWHAD: What Would Dr. Hanna-Attisha Do?
Leonard 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.
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On November 2, Center Professor Len Fleck, PhD, spoke at the Grace A. Dow Memorial Library in Midland, MI as part of a community engagement project. Dr. Fleck’s presentation, “From Chance to Choice: Genetics, Ethics, and the Future of Human Reproduction,” is summarized below. The premise for this presentation was a comment by Philip Kitcher in his book Lives to Come: The Genetic Revolution and Human Possibilities. His comment was that we had exited the age of genetic innocence and were now in the age of genetic responsibility (from which we could not exit).
Kitcher wrote that comment more than twenty years ago, when that comment still had a futuristic tinge to it. Today we are solidly in the age of genetic responsibility. Thirty years ago, future possible parents had to conceive “in fear and trembling” (to quote Soren Kierkegaard). They had no idea what genetic risks they might impose upon their future possible children. If a child was born with a serious, life-threatening genetic disorder, this was unfortunate, but no one was ethically blameworthy for that outcome. Today, with the availability of whole genome sequencing for about $1000, a couple can find out whether or not they might pose some serious genetic risk to their future possible children, along with alternative reproductive options that might allow them to bypass that risk, such as pre-implantation genetic diagnosis of eight-cell embryos conceived in vitro. With that new knowledge (or possibility for knowledge) comes new responsibility.
What sort of responsibilities might these future possible parents have? They might chose to have their children in the usual way. A liberal, pluralistic democratic society would be politically obligated to respect such a choice because these parents have both privacy rights and procreative liberty rights. This might mean a child will be born with cystic fibrosis, and all the health costs associated with that. That same liberal, pluralistic society will have obligations of justice and beneficence to provide the care (at social expense) needed by that child to have as good a life as possible (even though some taxpayers might object to paying for avoidable health care expenses).
There will also be many in our society who will object to permitting other future possible parents availing themselves of pre-implantation genetic diagnosis (PGD), which will involve the creation and discarding of some number of excess embryos carrying a serious genetic defect. However, this too is a liberty right and privacy right of these parents, which advocates for a Right to Life position may not justly deny these parents. Further, the cost of having a child via PGD will be about $40,000. This is a cost that might also require public financial support, which would be a matter of social genetic responsibility. Right to Life advocates might object to paying taxes to support an intervention to which they deeply conscientiously object. Still, this is what they are ethically and politically obligated to do. This is a matter of reciprocity, what the political philosopher, John Rawls, refers to as fair terms of cooperation.
In the future we will see our capacity to do gene editing at the embryonic level successfully evolve, which will require yet more ethical analysis of what this means for parental and social responsibility. It will also politically require much more mutual respect for diverse understandings of responsible reproductive decision making, which is what the ideals of a liberal, pluralistic society justly expects.
Center Assistant Professor Dr. Laura Cabrera has a new article in the open-access journal Frontiers in Sociology, titled “Reframing human enhancement: a population health perspective.”
The article is part of the research topic ELSI in Human Enhancement—ELSI stands for “ethical, legal and social implications.” Dr. Cabrera is a topic editor for ELSI in Human Enhancement, along with Dov Greenbaum of Yale University.
Abstract
The dominant understandings on human enhancement, such as those based on the therapy-enhancement distinction or transhumanist views, have been focused on high technological interventions directly changing biological and physical features of individuals. The individual-based orientation and reductionist approach that dominant views of human enhancement take have undermined the exploration of more inclusive ways to think about human enhancement. In this perspective, I argue that we need to expand our understanding of human enhancement and open a more serious discussion on the type of enhancement interventions that can foster practical improvements for populations. In doing so, lessons from a population health perspective can be incorporated. Under such a perspective, human enhancement focus shifts from changing the biological reality of individuals, to addressing environmental factors that undermine the optimal performance of individuals or that can foster wellness. Such a human enhancement perspective would be consistent with a population health approach, as it pursues more equitable and accessible interventions, on the path to addressing social inequality. Human enhancement does not need to be only about high-technological interventions for a selected group of individuals; rather it should be a continuous project aiming to include everyone and maximize the public benefit.
The planned lecture by Dr. Sandra Harding has been cancelled. Please note that we have scheduled a new lecture in its place:
Fear of the animal Other: a perspective on alterity for the medical humanities
Monica List is a doctoral student in the Department of Philosophy at MSU. She earned a veterinary medicine degree from the National University of Costa Rica in 2002, and an MA degree in bioethics, also from the National University, in 2011.
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