Dr. Stahl presents at 2017 Summer Institute on Theology and Disability

Devan Stahl photoCenter Assistant Professor Dr. Devan Stahl recently attended the Summer Institute on Theology and Disability in Azusa, California, held June 5-8. Dr. Stahl presented at two workshops. In “Recovering Christian Charity,” she presented on the history of disability charity in American culture to understand why many disability advocates reject charity. The workshop offered possibilities for recovering the traditional understanding of charity within the church and challenged Christians to understand charity in ways that do not demean or dehumanize persons with disabilities.

In the second workshop, “Reflections on Embodiment and Disability Advocacy,” Dr. Stahl joined a group of panelists offering personal reflections on how their understandings of and relationship to their own bodies impact how they carry out their scholarship and advocacy work in disability. The workshop aimed to encourage disability advocates to pay attention to their own embodiment and experience, to think about how that connects to the work they do, and how to use one’s own experiences to make their work deeper and more helpful.

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Dr. Eijkholt presents at 13th Annual International Conference on Clinical Ethics Consultation

Marleen Eijkholt photoThe 13th Annual International Conference on Clinical Ethics Consultation (ICCEC) was held on May 25-27 in Singapore. Center Assistant Professor Dr. Marleen Eijkholt attended and presented on a neuroethics panel, “A Cross Cultural Examination of Pain: Conceptual, Practical and Clinical Ethical Challenges.”

Pain is a relevant clinical problem, but also a social construct impacted by culture, environment, and gender. As a result, pain is perceived, framed and treated differently across cultures. However, minimal literature exists on cross-cultural examinations of pain.

Dr. Eijkholt and collaborators Nneka Sederstrom (U.S.), Daniel Fu-Chang Tsai (Taiwan), and Yonghui Ma (China) explored various challenges in the framing of pain across cultures. By focusing on a specific case, the panel examined the meaning of pain, the various challenges of the pain discourse, and the varying approaches toward pain through a cross-cultural lens. They delved into the ethical, legal, and social issues around pain. Asking: what is the relevance of pain in the clinical setting, what (in)abilities do patients and surrogates have to address pain in the clinical setting, how is pain treated, and what concepts frame the importance of pain, they sought to compare and contrast different approaches to draw lessons for working in a cross-cultural context.

Dr. Eijkholt also presented a case study titled “Clinical neuroethics: Cracking brains and health care systems.”

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Transplant Headaches: Head transplant on the horizon

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series

By Marleen Eijkholt, PhD, LL.B/LL.M

Introduction
On May 1, 2017, the Daily Mail reported on a successful head-transplant involving rats, as a “practice run for [a] controversial human experiment.” Indeed, this run would seem timely and perhaps minimal pertaining only to rats, given the proposed timeline toward the first-ever human head-transplant (HHT). Some reports suggest December 2017 as the date for the HHT, while others report that December is unlikely, and that the procedure would have to be delayed.

With the first HHT on the horizon, guttural yuck-reactions, and references to the ethical questionability of this procedure abound. A famous ethicist suggested that the surgeon is “out of his mind.” But I am unsure if this rejection is fair. If we have allowed the development of kidney, heart, hand, face, uterus, and penis transplants, why would this new area of transplant medicine raise prohibitive concerns?

Several areas of ethical concerns have been identified, and I want to address three reflections briefly here. Although many more could be identified, including the concern that a ‘body transplant’ also means that its other organs cannot be used for other purposes, I will not go into these issues due to word limitations. I offer thoughts for further discussion, drawing on parallels from other controversial (surgical) interventions, i.e. stem cell interventions for spinal cord injury (SCI) and deep brain stimulation (DBS). Often ethics is seen as a prohibitive ‘science’ but I do not want to endorse this idea. Instead, I hope to ask how we can ensure that this development proceeds as reflectively as possible.

Background

operating room photo

Image description: two surgeons are shown in an operating room while performing a transplant procedure on a patient who is out of frame. Image source: Scott & White Healthcare/Flickr Creative Commons

The history of HHT up to this point is described in many places. In 2013, an Italian surgeon, Canavero, first suggested his willingness to do a HHT, causing outrage and interest. Canavero has given a TED talk in the meantime, published several manuscripts [3, 19] and protocols [1, 2] on the procedure. Initially, one Russian individual, Valery Spiridonov, came forward to undergo the HHT and is now considered as potentially the first patient, while others have started to line up. Spiridonov has a degenerative and incurable muscle disease (Werdnig-Hoffmann) and is confined to a wheelchair. Cost-estimates of the procedure include a 7.5-20 million dollar, 36-hour operation, with a team of 150 people. The community has expressed serious reservations about the scientific feasibility. Still, we read that the first head-transplant in monkeys occurred in 1970 and that several dogs and mice have undergone the procedure. These were mostly as proof of principle, and not focused on long-term survival. Currently, there is no substantial proof that the recipient can be ‘kept alive’ long-term.

Informed Consent (IC)
A primary concern is whether Spiridonov can offer informed consent. Given his vulnerability, suffering Werdnig-Hoffmann disease, and based on reports about what Spiridonov said, these concerns are real. Spiridonov’s desire is to be like the “first man on the moon,” generate knowledge for future generations, and that the HHT will help him. Hence, he seems vulnerable to therapeutic misconceptions and risk-mitigation biases, especially in the light of a surgical learning curve that will challenge the first HHT [10]. Spiridonov’s narrative refers to the first man on the moon—who successfully made it—failing to mention the others who did not make it. Another part of this concern relates to identity problems that transplant individuals might experience with an alien body (part), where HHT concerns a whole body and an irreversible transplant [17].

These areas of concern have been dealt with at length, in reference to transplants and other emerging (surgical) interventions. I do think these concerns can be addressed, provided a thorough shared decision-making process, like in DBS [7]. Why would it be different in the HHT context?

Necessary Evidence
It seems an incredible leap to move from rat experiments to human interventions, without bigger animal models. However, such leap is not unprecedented, and might not automatically be condemned. Geron, a company that injected stem cell derived products in the spinal cord of SCI patients, moved from rat trials to humans. They skipped large animal models in assessing feasibility. Their decision was met two ways. One set of arguments stated the unacceptability of this practice as humans would now be exposed to unacceptable risks, based on insufficient knowledge. Another set of arguments was perhaps less outraged, suggesting that animal rights arguments might favor such direct application. Sacrificing large animals could not always be justified, especially if evidence in large animals may still not apply to humans [9]. Would it be in the HHT case?

Medical Need
A final question is: How to go about the risk/benefit assessment for someone whose medical need is not immediately life threatening? Spiridonov does not suffer an immediately life threatening illness, unlike liver failure, so some might argue that the risk/benefit profile of this experiment is disproportionate. Aside from concerns about the patient facing risks, executing novel risky experimental interventions may entail a loss of trust in the field if they go wrong. We have seen this in the tragic story of Jesse Gelsinger, gene therapy trial participant. So, some could argue that Spiridonov’s medical need does not warrant a loss of trust in science. But in response one could propose that for a proper risk/benefit assessment, weighing many factors is required. We see that for many composite allograft transplant areas as well as for DBS, the focus is on improving quality of life, not providing a cure. References to medical need and life-saving interventions are social constructs. If interventions like penis transplants were justified and marked as life-saving, referencing suicide concerns, life-limiting conditions like Spiridonov’s condition could put these concerns into perspective.

Conclusion
Although HHT are a new transplant territory, many of the headaches are familiar ethical concerns to the domain of novel transplant medicine and emerging surgical interventions. I am unsure that HHT is very different than the first heart transplant, which was met with huge skepticism, involving concerns about survival, IC, and identity. Heart transplants have offered huge progress in medicine, by generating new knowledge and applications for patient well-being. What makes us say that this body/human head-transplant is going to be less of a revolutionary intervention, and should be stopped before it even begins?

Marleen Eijkholt photoMarleen Eijkholt is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Obstetrics, Gynecology and Reproductive Biology in the Michigan State University College of Human Medicine. Dr. Eijkholt is also a clinical ethicist at Spectrum Health System.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 22, 2017. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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Chapter from Dr. Fleck published in ‘Cancer Biomarkers: Ethics, Economics and Society’

Leonard Fleck photoA 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.

From the Amazon description:

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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Pseudoscience and Measles in Minnesota

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series

By Hannah C. Giunta, DO, PhD, MPH

A recent measles outbreak in the Minneapolis-St. Paul, MN metro area is all over the news. More than thirty children have been treated at local hospitals, and at least 50 measles cases have been confirmed. The local Somali immigrant community has been hardest hit in large part due to their low vaccination rates. Commentators have demanded a variety of measures to control the vaccine-preventable disease, including enhanced border security. However, there has been less coverage of the outbreak as evidence of systemic social injustice.

Indeed, no matter what ones views are on compulsory vaccination, Somali parents’ vaccine refusal is not a case of informed, empowered parental choice but one of disadvantage and exploitation. The Somali immigrant community has been targeted by anti-vaccine activists spreading scientifically suspect information. Activists have taken advantage of an as yet unexplained increased rate of severe autism (but not autism in general) in the Somali community, encouraging parents not to vaccinate while spreading long debunked claims about the link between vaccination and autism. Realizing that internet rumors were not effective, activists have taken to personally visiting families and warning them about the dangers of vaccination. Yet, there is a real temptation to place some of the blame for the epidemic on Somali parents. Even commentators who rightly place blame on the anti-vaccine activists and declare the situation quite literally “a natural experiment” do not take the extra step of calling activists what they really are: gamblers and fraudulent pseudo-scientists willing to bet on the lives of disadvantaged children. This is not a case about free speech or poor parental decision-making; rather, it is a case of advocates conducting a so-called “natural” experiment where they stand to possibly gain the benefits (i.e. possible support for their cause) without taking on or acknowledging any of the risks faced by their subject-victims. The activists are guilty not just of being ill-informed and having dubious goals but also of perpetrating a larger social injustice.

While people certainly have the right to free speech and we all have a responsibility to evaluate the information presented to us, anti-vaccine advocates in this case chose to target a vulnerable population and to take advantage of individuals’ lack of empowerment. Of course, they did not set out to conduct a classic scientific experiment, but they are certainly still guilty of participating in a type of experiment. Some might say that the activists were just trying to help Somali families because they sincerely believe in a link between autism and vaccination. Others would argue that these individuals are not qualified scientists and were not performing research. But, the activists’ project was more devious than misinformation. The activists sought to target a minority community, take advantage of a medical puzzle, keep community members in the dark about their true objectives, and to recruit participants into a risky gamble where “benefits” primarily accrue to the activists themselves. After all, if the activists could point to any decline in the autism rate (regardless of causation) or show the public that vaccine-preventable infections are simple childhood illnesses from which children recover without incident, they would have more “data” to support their cause. The very fact that parents believed the activists likely lent more credibility to the anti-vaccine crusade in populist minds. If enough people believe the message, surely there must be something to it?

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Image description: a baby is in the hospital with measles in the Philippines. Image source: CDC Global/Flickr Creative Commons

The social injustice implications of a pseudo-research paradigm come into focus when we consider three major aspects of the case in question. First, the activists exploited their own relative privilege by providing biased information. There is no way that individuals engaged with the anti-vaccine campaign are unaware of vaccine-preventable diseases and the risks they present. They simply choose not to focus on those risks. They so strongly support their own hypothesis that they believe it to be true despite evidence to the contrary, much like a researcher might believe that nothing could possibly go wrong in an experiment. Anti-vaccine activists usually have access to many sources of information and thereby a certain degree of epistemic privilege. They have socioeconomic resources to travel to ethnic enclaves and meet with Somali families. On the other hand, the Somali community in Minnesota continues to struggle with poverty, unemployment, and related social ills. Somali children are already at-risk for poorer health outcomes, but the activists did not consider this relative health disadvantage.

Secondly, the activists maximized their own benefits while placing all of the burdens on the Somali children. The segregation of poor Somali immigrants into certain ethnic enclaves virtually insures that children, including the activists’ children, outside these neighborhoods face much less risk of illness. Should there be a serious outbreak, Somali children would bear the burden, not the activists’ children. The Somali community would also be blamed for not vaccinating their children, absolving the activists’ of responsibility through a leveraging of their privileged social position.

Lastly, even with obvious evidence that the Somali community is suffering a measles outbreak, activists have failed to reach out and attempt to retract their message. Their pseudoscientific project continues unabated. They cloak themselves in the language of science while allowing a natural experiment to run wild and harm innocent children. Clearly, they believe their agenda and hypothesis about autism causation are more important than the lives of innocent children. Measles does kill, and over 30% of children will experience one or more complications, including diarrhea and dehydration, pneumonia, and encephalitis. Perhaps, if anti-vaccine crusaders wish to engage in pseudoscience, we should hold them to the standards and responsibilities of real medical scientists, including the wrongful death of any children who succumb and the continuing expense of measles-related complications. You can’t yell “fire” in a crowded room if there really isn’t a fire, and activists have crossed a line and are doing just that. We, in the name of equitable health outcomes, need to remind activists that words do matter and their experiment has failed.

hannah-giunta-2017-cropHannah C. Giunta is a May 2017 graduate of the Michigan State University DO-PhD program. She received her MPH in May 2015 and her philosophy PhD in May 2016. Dr. Giunta is an incoming Mayo Clinic Pediatrics Resident.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 1, 2017. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

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Dr. Tomlinson presents at International Society for Biological and Environmental Repositories Annual Meeting

tomlinson-crop-2016Center Director and Professor Dr. Tom Tomlinson presented a talk on the “Effect of Deliberation on Attitudes Toward Biobank Consent Options” at the International Society for Biological and Environmental Repositories (ISBER) Annual Meeting held in Toronto on May 9-12. The talk presented findings from democratic deliberations held in 2015 as part of a larger NIH-funded project investigating the effect that people’s moral, cultural or social concerns (“non-welfare interests” or NWI) about possible future research uses of donated specimens and data might have on their willingness to donate and on their preferences regarding biobank consents.

The presentation focused on what effect the deliberations in themselves had on preferences among biobank consent options, as opposed to any effects attributable to the educational materials provided during the deliberation day. The study design made it possible to separate these, since participants were randomized into the deliberation group, an education-only group that received paper copies of the presentations with notes, and a control group that received no information. A logistic regression analysis revealed that compared to the education and control groups, the deliberators moved away from a blanket consent to any and all future research uses toward consents that in a variety of ways acknowledged or accommodated donors’ NWIs. These findings supported recommendations for increased transparency, stronger donor participation in biobank governance, and greater efforts to identify concerns among biobanks’ donor communities.

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Dr. Cabrera presents at 1st Congress for Ethics and Neurosurgery

cabrera-crop-2015Center Assistant Professor Dr. Laura Cabrera recently traveled to Stockholm, Sweden to attend and present at the 1st Congress for Ethics and Neurosurgery, held May 4-6. The congress was arranged by the Ethicolegal Committee of the European Association of Neurosurgical Societies (EANS), the Ethics Committee of the World Federation of Neurosurgical Societies (WFNS), the Department of Neurosurgery at Karolinska University Hospital, and the Swedish Society of Medicine.

Dr. Cabrera presented a talk entitled “Media Coverage & Public Perception on Psychiatric Neurosurgery.” The event brought participants from around the world, including Japan, Turkey, Canada, USA, Germany, Switzerland, and the Netherlands. The talks touched on a number of important ethical considerations in neurosurgery, such as innovation and conflicts of interest, value of life, the use of stem-cells in neurological disease, concurrent surgery, and professional responsibility. “Everyone left looking forward to the next edition of the congress,” said Dr. Cabrera.

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