Message from the President & CEO
Of all the idioms about the season—spring fever, hope springs eternal, spring cleaning—spring forward sums up the Foundation’s outlook right now. With warmer weather and more vaccinations every day, we are feeling hopeful about a reset to a post-pandemic new normal. As we take the first steps outside the shadow of COVID-19, bioethics scholars will still be doing the important work of analyzing and researching the costs and gains to health and society, and what we can learn from them to do better in the future. Bioethics isn’t a one-and-done calling; our leaders are committed to work that matters today, tomorrow, and in 50 years. This month in our blog, we’re highlighting future-looking Foundation-funded research on the ethics questions raised by cutting-edge bioengineering and technology.
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Spotlight
From assessing the performance of pacemakers to tracking a patient’s location and actions, modern technology is increasingly being used to monitor patient wellbeing. These remote monitoring devices provide extremely precise data on a patient’s health, which can improve their quality of care. Remote monitoring is particularly helpful for medically fragile patients. However, this data collection practice also creates serious moral and ethical risks. Bioethics experts are considering, for example, whether doctors invade a patient’s privacy via remote monitoring and whether it is inappropriate that patients often cannot access these data. The Foundation has been at the forefront of supporting research on the ethics and policy implications of medical remote monitoring, both through Making a Difference grants and the Faculty Scholars Program.
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From Our Blog
All living structures are made up of cells. Most cells are programmed to have one specific job, but there are a few cells that have transformational possibilities. In a laboratory, these kinds of cells can make organoids, clumps of tissue cultures grown outside the body. Organoids are a fast-moving area of scientific research with the potential to save lives; this research also raises ethical concerns. While scientists are capable of bioengineering synthetic living models of human biology, these entities do not fit into any current frameworks for bioethics guidelines or review. The Greenwall Foundation has funded bioethics projects aimed at helping researchers as they continue to do groundbreaking work in the study of organoids.
The unprecedented public health crisis caused by COVID-19 raises many complex ethical issues — from putting in place public health restrictions, to allocating protective equipment, critical care beds, and vaccines when the need far exceeds supply. Many Greenwall Faculty Scholars and Alums are on the front lines caring for those affected by the novel coronavirus, working to develop policies to provide practical recommendations on ethical issues. Here we provide links to their work, which we continue to update.
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Daniel B. Kramer, MD | Harvard Medical School
Douglas J. Opel, MD | University of Washington School of Medicine
Efthimios Parasidis, JD | The Ohio State University
Michelle M. Mello, JD, PhD | Stanford University
Greenwall Faculty Scholar Alums
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Should individuals be able to choose their COVID-19 vaccine? This question becomes more salient set against the backdrop of real-world scenarios. As vaccines roll out, meaningful differences in effectiveness against new SARS-CoV-2 variants and adverse reaction rates may emerge, along with new information about relative effectiveness in preventing transmission. In The New England Journal of Medicine, Dr. Kramer, Dr. Opel, Prof. Parasidis, and Prof. Mello say public health officials should anticipate these concerns and provide clear recommendations on accommodating individual preferences. But, at this point in the pandemic, countervailing considerations may be more compelling, and the authors recommend restricting patient choice. The key guideposts for their position are expediency, equity, and equanimity.
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Paul P. Christopher, MD | Brown University
Greenwall Faculty Scholar
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Civil commitment for substance use disorders is an intervention used more and more to reduce risks that come with severe substance use. In a pilot study published in The Journal of the American Academy of Psychiatry and the Law, Dr. Christopher and coauthors surveyed all court clinicians who perform evaluations for civil commitment for substance use disorders in Massachusetts, a state with one of the highest rates of such commitments in the United States Among the results, many court clinicians reported having endorsed commitment on one or more occasions in the absence of statutory criteria being satisfied. These findings underscore the need for additional research on the performance of civil commitment evaluations for substance use disorder and standards for such evaluations.
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Holly Fernandez Lynch, JD | University of Pennsylvania
Emily A. Largent, JD, PhD, RN | University of Pennsylvania
Greenwall Faculty Scholars
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As people line up to receive COVID-19 vaccines, open questions about vaccine efficacy and immune response may require additional research, potentially through human infection challenge studies. In The American Journal of Bioethics, Prof. Fernandez Lynch, Prof. Largent, and coauthors apply a framework for ethical research payment to help researchers set compensation amounts for participants in COVID-19 challenge studies. The authors recognize that these challenge studies will likely be on the high end of the payment spectrum and provide a payment worksheet to help develop and assess ethically justifiable payment amounts.
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Jeremy Sugarman, MD | Johns Hopkins University
Making a Difference Grantee
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Transplantation of HIV+ donor organs for HIV+ recipients is now being performed experimentally in the United States. However, this procedure raises ethical concerns. In the Journal of Patient-Reported Outcomes, Dr. Sugarman and coauthors write about a measurement framework they developed called PROMETHEUS (patient-reported measure of experimental transplants with HIV and ethics in the United States). It systematically captures patient experiences with experimental transplantation protocols and enables researchers to more accurately analyze the ways in which these transplants impact their recipients.
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“Without clear indications that requiring COVID-19 vaccination is legally forbidden, employers and universities should be allowed to do that — which isn’t to say a vaccine mandate is the right choice for a university or employer. That is a more complex question that will depend on expectations of how many employees or students will get vaccinated without a mandate and the effect of mandates on vaccine hesitancy.”
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Image credit: John Locher / AP
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“It is urgent that we end the coronavirus lockdown in the D.C. Jail. Continued lockdown is inhumane and inconsistent with public health guidance. If this lockdown continues, mental health issues, inmate violence and recidivism may spin further out of control.”
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Image credit: Jonathan Newton / The Washington Post
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"I'm sure it makes anyone who is morally serious nervous when people start creating structures in a petri dish that are this close to being early human beings.”
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Image credit: UT Southwestern Medical Center
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“One of the sad realities of social inequality is that the pandemic reveals social inequality and accentuates it both in the run-up to the pandemic . . . [and] in the unevenness that defines the end point of the pandemic itself. So the real danger is that one part of the population, the population that's privileged, declares an end to the pandemic before it actually ends for people who are not as privileged.”
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“Age-only distribution is unethical, likely illegal and bad health policy. It also abdicates the government’s responsibility to seek equity and proactively reach out to high-risk people in search of the mirage of value neutrality. Simplicity and speed are valuable, but equity and fairness should not be abandoned in the pursuit.”
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Image credit: Patrick T. Fallon / AFP / Getty Images
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Coming Up
NAM Greenwall Fellowship in Bioethics Nominations Due | June 3
The call for nominations is now open for the National Academy of Medicine’s Greenwall Fellowship in Bioethics, which enables early-career investigators to participate actively in the work of the National Academies of Sciences, Engineering, and Medicine and to further their careers as future leaders addressing bioethics issues in clinical care, biomedical research, and public policy. Nominations close June 3 at 3pm ET.
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