Center Assistant Director and Associate Professor Karen Kelly-Blake, PhD, recently presented at the Michigan Academy of Nutrition and Dietetics 2021 Virtual Spring Conference. Dr. Kelly-Blake presented on “Dietitian and Client Base Mismatch: Are There Ethical Implications?”
In this information age, the ways patients gather information about their health and how they process this information to make decisions, within the constraints of their particular social context, is of utmost importance. Dr. Kelly-Blake explained the value and ethical aspects of shared decision-making to enhance nutrition adherence goals, help practitioners understand the constraints of the dietitian and client dyad mismatch, and address this mismatch with the goal of advancing professional practice.
Recent U.S. headlines are starting to reflect a dawning public awareness that health experts have long suspected: COVID-19 might be with us for a long time. In January 2021, almost 90% of coronavirus expert respondents to a poll by Nature considered it “likely” or “very likely” that the virus will continue to circulate somewhere on the globe for years to come. As vaccine rollout continues, the crisis in India has yet again revealed the devastating consequences of pandemic mismanagement. Only two infectious diseases have been successfully eradicated globally: smallpox, and the lesser-known rinderpest. A world in which COVID-19 is endemic might be one that requires long-term public health planning and requires bioethics to recalibrate. The global health and social impact of the pandemic makes COVID-19 challenging to compare to other infectious diseases. However, ongoing multidisciplinary analysis of tuberculosis (TB) provides one demonstration of the possible contributions of bioethics looking forward.
Pandemics as social levelers
A bacterial as opposed to viral infection, TB outbreaks peaked in different places across the world throughout the 1700s and 1800s (Barnes, 2020). During such periods, TB affected people across social strata. Affluent instances of TB contributed to the emergence of social narratives romanticizing TB as a condition striking those with a more sensitive and artistic temperament (Bynum, 2012). Prior to the emergence of germ theory, TB was considered a hereditary condition, running in families with such temperamental proclivities. The notoriety of some TB patients bears resemblance to early celebrity cases of COVID-19 that circulated on social media, normalizing infection while illustrating both recovery and vulnerability. The social and cultural variability of such notoriety is also significant, with India’s highly publicized celebrity suicides during lockdown requiring more analysis to tease apart the mental health impact of COVID-19. Meanwhile, the death of well-known human rights advocates, such as actor Vira Sathidar, from COVID-19 has prompted reflection on the pandemic’s cost to India’s creativity in addition to the devastating loss of life.
Image description: Print from 1922 shows a girl sitting by a window watching children playing outdoors. The title reads “Outdoor Play and Tuberculosis,” with the text: “Outdoor play is as necessary to health as food or sleep. At home, let the children play in the yard or on a well-guarded roof. At school, ample open air playgrounds must be provided. The city that fails to provide public playgrounds may be forced to provide tuberculosis sanatoria.” Image source: public domain/GetArchive.
Hopes for eradication
In the early 1900s, incidence of TB declined as living and nutrition conditions improved, and as populations acquired natural immunity. Some of these improvements were prompted by critiques of industrialization, which contributed to crowded and inhumane living and working conditions (Barnes, 2020).And yet, the same romantic narratives that normalized TB in the affluent also reflected and fostered social indifference to—and scapegoating of—the poor living with TB (Bynum, 2012). The development of effective antibiotic treatment and a childhood vaccine accelerated population health gains in the 1940s and 1970s respectively. The relative influence of economic, political, and biomedical casual factors in driving the decline of TB continues to generate debate across epidemiology and social sciences. Public health gains during this century shaped hopes for global TB eradication.
Rising inequality
However, the 1990s marked a time of increased recognition of resurgent TB across all nations. As with the recent COVID-19 surge in India, a social model of health is needed to account for resurgence of TB. 20th century rates were simultaneously influenced by global policy failure to address health needs of those in poverty, cultural and political events, and new pathogen variants. The rise of HIV and AIDS produced a distinct yet overlapping pandemic, as the immunocompromised are especially vulnerable to TB co-infection. Multidrug resistant tuberculosis (MDR-TB) had been developing alongside use of antibiotics. Medical anthropologist and physician Paul Farmer has been widely critical of global economic policy, which influenced bifurcated standards of care in affluent Western nations and the global south and to the rise of MDR-TB. The moral valence of communities worth investing in is also intertwined with histories of colonialism and ongoing racial and class dynamics that we have seen recapitulated during COVID-19 within the U.S. and globally.
Resistance and its social meaning
Antimicrobial resistance raises a distinct set of ethical issues, from obligations of antimicrobial stewardship to imperatives for drug and diagnostic tool development. The potential for development of COVID-19 vaccine resistance is an ongoing concern. Some fear that SARS-CoV-2 variants have mutations that render them uninhibited by (resistant to) neutralizing antibodies, thereby creating the possibility of “escaping” the immune system response seen in the already infected and/or vaccinated. The development of immune escape is a crucial factor in determining whether COVID-19 becomes endemic. The social implications of pathogen genomics are multifaceted:
First, identification of new variants is now viewed by media organizations as newsworthy, influencing public perception of how outbreaks occur. The history of TB demonstrates that public interest could wane if media organizations in affluent nations lose interest in their novelty.
Second, genomic surveillance illustrates one of the most promising areas of precision public health, requiring ethical guidance for establishing trust, transparency, and community welfare. However, the history of TB demonstrates the continuing global disparities in global health surveillance laboratory capacity.
Third, Emily Martin’s ethnographic work on American understandings of immunity demonstrates the interplay between depictions of the body and pathogens, expert and lay experiences of disease, and social ideals (Martin, 1994). COVID-19 has undoubtedly altered human views of their relationship to microbes and will continue to do so in unanticipated ways.
Economics & TB
Currently, almost one quarter of the world’s population lives infected with tuberculosis. Many have a latent TB infection, which is not contagious. However, if untreated, latent TB can develop into active TB. The World Health Organization estimates that 10 million people fell ill and 1.4 million people died from TB in 2019. India leads the world in TB cases, an often-noted harbinger of its potential role in COVID-19 global health outcomes. The social determinants of health continue to need greater policy attention: 49% of people with TB continue to face catastrophic costs, defined as greater than 20% of annual household income. Drug resistance exacerbates these economic barriers: around 80% of people with MDR-TB face catastrophic costs. The economics of COVID-19 echo these relationships. As I write, members of the World Trade Organization are negotiating details of waiving COVID-19 vaccine intellectual property rights.
Image description: Black and white photo of a tuberculosis ward of the Hasköy Hospital for Women in the late 19th century. Image source: public domain/GetArchive.
Image description: A row of empty beds in a hospital ward in Assam, India in response to the 2020 COVID-19 pandemic. Image source: AnjanBorah/Wikimedia Commons.
Endemics and social justice
The newly renamed MSU Center for Bioethics and Social Justice is an apt reflection of the shifting role of bioethics, including its attention to matters of population health. Emeritus faculty member Judith Andre notably argued bioethics is best understood as a multidisciplinary practice (Andre 2002). Bioethics practices must change in response to persistent and rising health inequities, including in infectious disease. TB outbreaks have affected community health for millennia, impacting residents of ancient Egypt and Greece. It is Ancient Greek, too, that provides the etymological differentiation between pandemic and endemic infections: pan, meaning “all,” en meaning “in,” and demos meaning “people.” We can sustain hope that COVID-19 will fade into the background, becoming another one of many common childhood coronavirus illnesses that does not confer serious symptoms. However, as this brief glimpse of the ethics and history of TB illustrates, COVID-19 merits distinct ethical analysis to avoid complacency.
Join the conversation
Global eradication of COVID-19 through universal vaccination requires a collective effort on a scale rarely achieved in human history. How do you think bioethics can generate new collaborations to sustain the global response to COVID-19? What values are relevant to you if COVID-19 becomes in the people as well as affecting all of us in this global emergency?
Karen M. Meagher, PhD, is an Assistant Professor of Biomedical Ethics Research at Mayo Clinic. Her main research interest is in ethics and social implications of human and pathogen genomics. She also holds the position of associate director of public engagement in which she leads a community engagement network for the Mayo Clinic Biobank in the Center for Individualized Medicine.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, May 27, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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In 2017, Josiah Zayner live-streamed himself injecting a gene therapy construct designed to edit the DNA in his muscle cells to give him bigger muscles. This moment was noteworthy because the gene therapy construct had been created entirely by Zayner in his garage laboratory. Such work is called biohacking or DIY biology.
These actions do not come without consequences. He has recently been investigated for practicing medicine without a license, and the state of California recently passed a law to require all such kits to include a notice “stating that the kit is not for self-administration.”
What is Biohacking?
Zayner is not alone; in fact, the biohacking movement is growing across the country. Zayner also sells kits that allow other biohackers to experiment with DNA and gene editing from his website, The Odin. There are also laboratories across the country that allow interested people to have space to conduct biology experiments without having to build a home laboratory.
Biohacking at its core is bringing science out of the laboratories of academia and industry and into grasp of citizen scientists. But the exact definition of what is included in biohacking differs among people. Biohacking includes a diverse variety of science experiments such as tracking of sleep and diet, under-skin implantation of computer chips and other technology, ingestion of “smart drugs” and sub-clinical levels of LSD, transplantation of gut and skin microbiomes, infusion of “young blood” to reverse aging, and genetic modification of bacteria, yeast and human cells.
Image description: an equipment setup called a “makerbay” in a Hong Kong biohacking makerspace. Image source: Athena Lam/Flickr Creative Commons.
Each type of biohacking brings its own risks and rewards. This blog post will focus on genetic modification of cells using new gene editing techniques such as CRISPR. Advances in gene editing technology over the past five years have made accessible science that was once confined to expensive, high-technology laboratories. For a broader look at CRISPR and gene editing by researchers and bio-hackers, Netflix has a new documentary series, Unnatural Selection.
Benefits of Biohacking
First and foremost, the benefit of biohacking is access to science. Not everyone can afford an advanced degree biology or wants to work full time in a laboratory. Biohacking democratizes science for people who have a passion for learning about the world and how it works. It also has the potential to increase access to medicine. One endeavor, the Open Insulin Project, attempts to find a cheaper and intellectual property-free way to produce and distribute insulin to make it available to people who have a hard time affording the drug.
In addition to access, biohacking communities are also hubs of outreach and education. The laboratory spaces often hold classes and meeting spaces for like-minded individuals to network. There are competitions that bring together student and citizen scientist teams who work on using synthetic biology to create biological solutions to local and international problems.
Biohackers are taking these responsibilities seriously as a whole. The community has even developed its own code of ethics emphasizing open access, transparency, education, safety, environment, and peaceful purposes.
Risks of Biohacking
Although biohacking has many benefits, there are risks of which the world and individual citizen scientists should be aware. Perhaps the largest potential threats are the lack of education and regulation within the biohacking community.
Image description: two people are gathered at a table containing various types of scientific equipment. Image source: Martin Dittus/Flickr Creative Commons.
While Josiah Zaynor holds a PhD in biopohysics, not all biohackers are so well educated. Community laboratories help with classes and mutual support, but home-based biohackers must rely on their own knowledge and understanding, though websites are available for questions and discussions. Education and outreach to biohackers is also the strategy of the FBI in recent years, though many biohackers are reticent to accept its help. Additionally, while the community does have a code of ethics, there is little formal ethics training in concepts such as informed consent or using animals in research.
Due to the open definition and decentralized structure of biohacking, regulation is almost impossible. Lack of regulation leaves laboratory safety in the hands of the biohackers. As with any scientific endeavor involving genetic engineering, accidents can occur that could lead to the release of environmentally destructive organisms. Biohackers injecting themselves or others could cause any number of infections or adverse reactions. Additionally, the risk of the development of dangerous or ineffective gene therapies and other products by biohackers has led the Food and Drug Administration to issue warnings to the public about untested products. This risk is especially relevant in an era of rising drug costs.
Other dangers, such as specific threats to biosecurity, are real but attenuated. While it is possible biohackers could genetically engineer a bacteria or virus, there are far easier ways for a small-scale terrorist group to attack.
Future of Biohacking
Highly technical equipment and processes are becoming more accessible. People are looking for ways to take control of their health and provide access to medicines. Curiosity about the natural world should be encouraged.
The risks are real, but we can deal with them by working together. By having community leaders willing to confront the risks and help develop community norms, we can shape the application of biohacker energies. Zayner himself has realized that other biohackers may seek to emulate his self-experimentation and get hurt.
In the end, biohacking is here to stay.
Jennifer Carter-Johnson, PhD, JD, is an Associate Professor of Law in the College of Law at Michigan State University. Dr. Carter-Johnson is a member of the Michigan State Bar. She is registered to practice before the U.S. Patent and Trademark Office.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, November 14, 2019. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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Preventing Harm
Suppose your colleague was diagnosed with tuberculosis on Friday but tried to come into work on the following Monday. You would be right to call local public health officials, and they would be warranted in isolating him. Now suppose instead that he was diagnosed with lung cancer on Friday but came into work Monday. You would be wrong to call local public health officials and they would be wrong to isolate him. When a person’s health or behavior are a threat to others’ well-being, there is greater moral justification for restricting the liberties of that person. This is just the converse of Mill’s Harm Principle, which states that the only time it is permissible to restrict a person’s actions is when those actions threaten to harm another person.
Recently, the Australian Medical Association declared climate change a threat to the public’s health. This comes after a similar declaration was backed by organizations such as the American Medical Association, the American College of Physicians, the American Academy of Pediatrics, and the American Lung Association. Climate change is a health emergency that threatens the health and well-being of the public. Just as your colleague is a threat to the health and well-being of those around him, climate change is a threat to the public’s health and well-being. Thus, Mill’s Harm Principle applies—in principle it is permissible to restrict liberties to prevent the harm that ensues from climate change.
Public Health Ethics
When your colleague sees his oncologist about his lung cancer, the physician likely prioritizes the patient’s well-being. But public health ethics takes a more utilitarian approach: the individual’s interests are secondary to the greater good. Instead of balancing values such as patient autonomy and the physician’s judgment about what is most medically appropriate, public health ethics primarily balances liberty, equality, and utility (benefit). This to say that, for example, one person’s liberty may be justifiably restricted so that greater utility to the public may be achieved, or that it may be permissible to sacrifice some utility so that everyone can be subjected to the same treatment. Other values such as transparency or solidarity may be incorporated secondarily.
Image description: A large stack billows dense smoke into the air that appears pink against blue sky. Image source: Billy Wilson/Flickr
Viewing climate change through the lens of public health ethics, which interventions best balance liberty, equality, and utility? There is significant disutility of not doing anything—there will be incalculable harm to very many people. The cost of doing nothing is so high that there is almost no benefit we might achieve presently that could outweigh it. Trading the harms we will suffer by doing nothing for the benefit we might achieve by doing nothing is a bad deal for us and a much worse deal for the next generation.
It is not commonly noted, but the same could be said for liberty—by doing nothing we trade future liberties for present ones. If we want to promote liberty in the future, we need to restrict it now. Currently those who are best positioned to intervene on climate change enjoy an extensive scheme of liberties. We can cool our houses to 68 degrees in the middle of summer; we can travel by jet to anywhere we might want to go; we can preserve our food in disposable plastic containers; we can mostly go outside without fear of catching a mosquito-borne illness; we can even use plastic rather than paper straws!
Inaction and Liberty
If we do nothing in the name of preserving these liberties, we stand to lose much more. It’s pointless to travel by jet to a place that’s underwater or that’s so hot it could kill you, to say nothing of the prospects of actually living there. When the changing climate displaces those living in New Orleans, Phoenix, Miami, the mid-Atlantic, or anywhere else in the world that will be uninhabitable, those people have to go elsewhere, increasing population density in those areas. Cooling our residences and workplaces may be prohibitively expensive, along with refrigerating our food, manufacturing plastic straws, or going outside in shorts and a t-shirt. Such effects will only exacerbate social inequalities.
Or consider the worst-case scenario, one in which climate change exerts too much pressure on governments, undermining their ability to uphold the laws that democracies have agreed to, such as laws prohibiting taking another person’s stuff. In such a scenario one’s scheme of liberties might be as extensive as it could possibly be. But in that case life is solitary, poor, nasty, brutish, and short—all conditions that make it impossible to exercise those liberties and that significantly limit one’s self-determination. The dead have no liberties. For people who want to preserve and promote individual liberty, it makes sense to intervene now.
To What Extent?
If ethical intervention upon threats to the public’s health requires finding the best balance of liberty, equality, and utility, then we have justification to restrict present liberties. Doing so not only promotes greater future utility, but it also promotes greater future liberties. I have not addressed equality, but as things stand now doing nothing will exacerbate social inequalities. But to what extent can present liberties be restricted?
Image description: two brown and white cows are shown within a crowded group of cattle. Image source: Beatrice Murch/Flickr
Given the severity of the threat climate change presents to future liberties, it may be reasonable to prohibit air travel, driving vehicles that fail to meet certain emissions standards, eating beef, or even using plastic straws and incandescent light bulbs.
I mention above that there are other values that may be considered. If it is permissible for states—in the name of public health—to restrict present liberties to promote future liberties, how can they do so transparently? Does restricting present liberties promote or undermine solidarity among the population? If restricting present liberties undermines solidarity, does it do so to the degree necessary to outweigh the promotion of future liberty, equality, and utility?
Parker Crutchfield, PhD, is Associate Professor in the Program in Medical Ethics, Humanities, and Law at the Western Michigan University Homer Stryker M.D. School of Medicine, where he teaches medical ethics and provides ethics consultation. His research interests in bioethics include the epistemology of bioethics and the ethics of enhancement, gene editing, and research.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, October 10, 2019. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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Center Professor Dr. Tom Tominson and co-author Raymond De Vries have an article in the March-April 2019 issue of Ethics & Human Research, “Human Biospecimens Come from People.” The issue’s theme is “The Scientific Value and Validity of Research.”
Abstract: Contrary to the revised Common Rule, and contrary to the views of many bioethicists and researchers, we argue that broad consent should be sought for anticipated later research uses of deidentified biospecimens and health information collected during medical care. Individuals differ in the kinds of risk they find concerning and in their willingness to permit use of their biospecimens for future research. For this reason, asking their permission for unspecified research uses is a fundamental expression of respect for them as persons and should be done absent some compelling moral consideration to the contrary. We examine three moral considerations and argue that each of them fails: that there is a duty of easy rescue binding on all, that seeking consent creates a selection bias that undermines the validity of biospecimen research, and that seeking and documenting consent will be prohibitively expensive.
The full text is available online via Wiley Online Library (MSU Library or other institutional access may be required to view this article).
Center Assistant Professor Dr. Laura Cabrera recently spoke at the Michigan Academy of Nutrition and Dietetics annual conference, held April 26-27 in Bay City, MI. Dr. Cabrera spoke on “Dietetics and Ethics: What is your Professional Role?” Her talk aimed to provide guidance on understanding and identifying ethical issues that registered dietitian nutritionists (RDNs) and nutrition and dietetic technicians, registered (NDTRs) may face in their practices. Her session was well attended and interactive.
Dr. Cabrera also traveled to New Jersey to speak at the Ethics of Enhancement Workshop at Rutgers University-Camden, held April 27. There she spoke on “Neuroenhancement: Rethinking Human Values.” Her talk aimed to explore the way values affect and are affected by enhancing cognitive, affective and social abilities, and argued that a social responsibility framework could help us bridge the tensions underlying the interplay of values and neuroenhancement practices.
Center Professor Len Fleck, PhD, was a keynote speaker at the Great Lakes Biorepository Research Network (GLBRN) Annual Scientific Meeting, held at Beaumont Hospital-Royal Oak Campus on November 3. The title of Dr. Fleck’s presentation was “Precision Medicine, Ethical Ambiguity,” summarized below.
What is precision medicine? A short answer would be getting beyond “one size fits all” drug therapy, with all the side effects and misfits that implies (e.g. traditional chemotherapy). Instead, medicine would stratify patients with a specific disease, such as some cancer, into subgroups so that therapy could be tailored to the specific genetic features of their cancer. The overall goal is to maximize the beneficial effects of an available therapy for a specific patient, minimize debilitating or dangerous side effects, and save money for the health care system. How could there be ethical problems with goals such as that?
The most significant problem relates to health care justice, the fair distribution of access to the fruits of precision medicine. The basic problem is that these targeted cancer therapies are extraordinarily expensive. More than 70 of these cancer drugs have been approved by the FDA since 2000.
Cost: $70,000–$200,000+ for a course of treatment.
One form of combination therapy is priced at $86,000 per month.
Kymriah for Acute Lymphocytic Leukemia (ALL) is priced at $475,000 for a one-time treatment.
None of these drugs is curative.
Median gains in life expectancy for patients is measurable in weeks or months for the most part.
Several hundred more such drugs are in the pipeline.
Fojo and Grady have pointed out that these drugs yield incremental cost-effectiveness ratios (ICERs) of several hundred thousand dollars to more than a million dollars per Quality-Adjusted Life Year (QALY).
Imatinib (Gleevec) was approved in 2001 for the treatment of Chronic Myelogenous Leukemia (CML). It is extraordinarily effective for the 70% of these patients who have survived at least ten years beyond diagnosis. It was priced at $36,000 per year in 2001, and must be taken indefinitely. In 2016 imatinib was priced at $146,000, even though nothing at all changed with regard to the drug itself. Another drug, Iclusig, was priced at $120,000 for a year in 2015. In 2016 the price was raised to $200,000. We will pass over in stunned silence at the obvious ethical issues here.
As a society that seeks to be just and caring in meeting health care needs we struggle to identify the ethical norms that should govern access to these targeted cancer therapies. Keep in mind that these drugs are for metastatic cancer, almost always a terminal diagnosis. Consequently, we often appeal to inchoate (and problematic) ethical intuitions. We appeal to the “rule of rescue,” “last chance therapies,” “the pricelessness of human life,” and the “visibility of desperate patients,” all of which seem to generate an ethical obligation to fund access to these targeted therapies. Unfortunately, that obligation runs out of ethical steam once insurance runs out. In health care, our sense of obligation has evolved to select for money.
Some sad conclusions: (1) No moral theories or “compelling” moral arguments are going to yield clearly satisfactory ethical resolution to these allocation/ priority-setting challenges. Not just cancer counts (ethically speaking). (2) Ultimately, given limited resources (money) for meeting unlimited health care needs we will have to rely upon fair and legitimate processes of rational democratic deliberation constrained by relevant clinical evidence and broadly endorsed considered judgments of health care justice. (3) For the foreseeable future, precision medicine will remain infected with clinical uncertainty, ethical ambiguity, disingenuous politicking, and byzantine economic accounting (not to mention pharmaceutical philandering).
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 Professor Dr. Leonard Fleck has a new article in Ethics, Medicine and Public Health. Dr. Fleck’s article, “Just caring: Do we need philosophical foundations?,” appears in the April-June 2017 issue.
Abstract
The “Just Caring” problem asks: What does it mean to be a “just” and “caring” society when we have only limited resources (money) to meet virtually unlimited health care needs (linked to novel emerging medical technologies)? The practical implication of the “Just Caring” problem is that the need for health care rationing is inescapable. That means that some health care needs will not be met, even though those needs have moral weight, because meeting such needs is presumptively a matter of justice. How then can such rationing decisions be made justly or fairly? And who should have responsibility for making such decisions? Should such decision-making be the responsibility of legislative bodies, or administrators of health care institutions, or associations of physicians, or private insurers (in the United States), or employers (in the United States)? What should be the role of philosophers in addressing the problem of just health care rationing? After all, philosophers are supposed to be the experts when it comes to theories of justice. And, if philosophers are supposed to have such a role, are their judgments of health care justice going to be justified by appeal to ethical foundations of some sort? In this essay, I start by conceding that philosophers have had much to say about how we ought to conceptualize our understanding of the notion of justice. But the world has become enormously more complicated since Plato and Aristotle offered their reflections on justice. The same is true for Hume and Kant. Those perspectives seem remote and unhelpful about the problem of just health care rationing. The same would seem to be true about Rawls (1971) and Nozick (1974). Their theories of justice are simply too broad and too abstract to address the complex, heterogeneous problems of just health care rationing in the real world of health care we have today (though, as I show later, Rawls does have much to offer regarding the notion of public reason).1 In the first part of this essay I sketch out several concrete problems of health care rationing having to do with the allocation of targeted cancer therapies, drugs used to treat patients at risk for heart disease, drugs used to treat HIV+ patients, and drugs used to treat very rare diseases. This provides helpful context for the remainder of the essay. In the second part of this essay I argue that traditional theories of justice have only a limited role to play in addressing these problems of health care rationing. This is because no perfectly just answer can be given for the vast majority of real world problems of health care justice. Instead, what we need to settle for are non-ideal resolutions of these problems. Ultimately, I would defend a pluralistic conception of health care justice, which is another reason why we need to settle for non-ideal resolutions. Those non-ideal resolutions will have to emerge from broad, inclusive, fair processes of rational democratic deliberation. Those deliberations will be aimed at achieving a reflective balance of competing considerations of health care justice with respect to a very specific problem of health care rationing. In the third part of this essay, I argue that the role of philosophers is to protect the integrity of this public deliberative process, as opposed to seeking ethical foundations for their judgments of health care justice. This, I argue, entails three responsibilities for philosophers. First, these public deliberations need what we might call “just boundaries”. Those boundaries are defined by what I refer to as “constitutional principles of health care justice”. The role of philosophers is to articulate those constitutional principles and what counts as a reasonable balance among those principles as they are applied to specific problems of just health care rationing. Second, the role of philosophers is to articulate a specific understanding of “public reason”, which would govern those democratic deliberations. Here I have in mind the work of Rawls and his notions of “the rational” and “the reasonable” (Rawls, 1993). Third, philosophers have their traditional Socratic role of being thoughtful critics of the outcomes of these public deliberations, mindful of the fact that most outcomes will be non-ideally just. That is, philosophers must distinguish outcomes that are non-ideally “just enough” from those that are not “just enough”. Ultimately, the role of philosophers is not to construct or discover just foundations for these deliberative processes but to protect the fairness and integrity of the deliberative process itself.
The full text is available on the ScienceDirect website (MSU Library or other institutional access may be required to view this article).
A chapter from Center Professor Dr. Leonard Fleck has been published in the book Cancer Biomarkers: Ethics, Economics and Society, published by Megaloceros Press. Dr. Fleck’s chapter is titled “Just Caring: Precision Medicine, Cancer Biomarkers and Ethical Ambiguity.” The book is edited by Anne Blanchard and Roger Strand.
Cancer care is undergoing a shift from a ‘one-size-fits all’ approach to more personalised medicine. One way of personalising cancer treatments is through biomarkers: molecules or biochemical changes found in the patient’s tissues and body fluids. This book reflects upon the promise of cancer biomarkers and asks questions such as: How may the complexity of cancer biology impede the robustness of biomarkers in the clinic? How should one draw the line between the various sub-groups of patients for personalised treatment? How can one evaluate the cost-effectiveness and fairness of personalised cancer treatments? By bringing together authors from the fields of science and technology studies, medical ethics and philosophy, health economics and oncology, the book aims to give a critical yet accessible overview of some of the key social, ethical and economic issues that surround cancer biomarkers. “The book should be required reading for oncologists, medical students, graduate students and especially for those who make policy decisions regarding the use and reimbursement of cancer biomarkers.” – Bruce Zetter, Charles Nowiszewski Professor of Cancer Biology in the Department of Surgery, Harvard Medical School
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