What are the ethical implications of gene-editing human embryos? Do we risk stifling scientific advancement by banning such medical research?
Guests Dr. Leonard Fleck, Acting Director and Professor in the Center for Ethics and Humanities in the Life Sciences, and Dr. Marleen Eijkholt of Leiden University Medical Center in the Netherlands discuss the pros and cons, stemming from the recent news out of China of gene-edited babies. They share thoughts on the ethical implications of using such technology to alter human embryos, both now and in the future.
This episode was produced and edited by Liz McDaniel in the Center for Ethics. 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 Ethics and Humanities in the Life Sciences in the Michigan State University College of Human Medicine. Each month Center for Ethics faculty and their collaborators discuss their ongoing work and research across many areas of bioethics—clinical ethics, evidence-based medicine, health policy, medical education, neuroethics, shared decision-making, and more. Episodes are hosted by H-Net: Humanities and Social Sciences Online.
Center Professor Len Fleck and Marleen Eijkholt, former Assistant Professor with the Center, recently presented at the 2018 International Bioethics Retreat, held in Paris, France on June 27-29. The conference has been sponsored by Cambridge University for the past eighteen years.
Dr. Fleck presented on “Personalized Medicine? Precision Medicine? What is Just Enough?” He addressed a question raised by Warwick Heale in an article in the Journal of Medical Ethics.
Heale was writing about the use of a quality-adjusted life year (QALY) cost-effectiveness methodology to make allocation decisions in health care. Heale identifies himself as a utilitarian. He generally wants to obtain the most medical good for a population group at the lowest cost. However, Heale notes that the use of this methodology is about averages for a population group. He wants to argue that if a population group cannot be treated cost-effectively with some very costly cancer drug, then it would be unjust to deny that drug to any individuals in that group whom we could identify before the fact who would benefit very significantly and cost-effectively from that drug. This has a certain intuitive moral reasonableness about it.
However, Fleck argued Heale’s proposal has some morally problematic aspects as well. He asked his audience to consider Laurel and Hardy. Both have the same medical problem; both would benefit from access to a certain costly drug. The quantity of the drug is administered on the basis of weight. It is clear that the drug is cost-effective for the average 70 kilogram person. Laurel weighs 57 kilograms. The drug is even more cost-effective for him. But Hardy weighs 90 kilograms; the drug would not be cost-effective if given to him. The logic of Heale’s position would require denying the drug to Hardy. This would strike most physicians (as well as most patients) as clearly unjust, especially if we were talking about a drug that was not absolutely scarce.
Heale wrote this paper to suggest a better approach to allocating money from the UK Conservative government’s Cancer Drug Fund, which was mostly without ethical moorings for several years. However, Fleck concluded that Heale’s proposal might effectively address the economic challenges faced by the Cancer Drug Fund while adding to the moral challenges intrinsic to the creation of the fund in the first place.
Dr. Eijkholt spoke on “Medicine’s Collusion with False Hope: False Hope Harm.” She proposed a new argument to think about interventions that are offered for consumer demands rather than for medical reasons: i.e. the False Hope Harm. She proposed that hope serves important functions in medicine. Hope can be “therapeutic” and important for patients to “self-identity as active agents.” However, in consumer medicine, like in much of the U.S. health care context, hope could also take on a different role. Scenarios like Jahi McMath and Charlie Gard make us wonder if hope can be harmful too. In fields like stem cell medicine or cancer treatment, where providers justify their support for medical interventions with “it will make them feel better,” we can also identify the risk of such harm. While one might argue that we should not deny anyone such hope in the face of emotionally vivid stories, Dr. Eijkholt argued that the profession has an obligation to avoid false hope harms.
Center faculty members Marleen Eijkholt and Devan Stahl attended and presented at the 14th International Conference on Clinical Ethics Consultation (ICCEC), held June 21-23 in Oxford, England.
Dr. Eijkholt presented as part of a collaborative panel on “Helpfulness in Clinical Ethics Consultation Notes,” which also included Dr. Stahl, Dr. Stella Reiter-Theil, and Dr. Jugen Wallner, who are respectively from Germany and Switzerland. Dr. Eijkholt presented her paper, “An Empirical View on Helpfulness in Clinical Ethics Consultation Notes,” which outlined the data that she had gathered from analyzing case consultation notes from fellow clinical ethicists. She explored the questions: What made their notes helpful? How should clinical ethics consultation (CEC) chart notes be formulated to be most helpful, while being mindful about professional boundaries, and being mindful about the recipients of these notes, i.e. vulnerable health care providers who are not necessarily philosophers? While medical providers are used to reading notes from their fellow consultants in the form of conclusions–such as, “patient is in kidney failure,” “palliative care recommends x dosages of morphine”–ethics consultants hardly ever find themselves faced with a clinical scenario that allows for such “simple” conclusions. Moreover, such authoritarian conclusions are undesirable according to the framework of the clinical ethics profession. CEC recommendations therefore take a different format. After analyzing several notes, Dr. Eijkholt concluded with an acknowledgement of the tension between quality and helpfulness.
Dr. Stahl presented on the panel “Is there a place for clinical ethics consultation outside of the hospital setting?” alongside Kevin Dirksen, Tyler Gibb, and James Hynds. The group discussed models for doing outpatient clinical ethics consultation at their respective hospital settings. Dr. Stahl presented on new efforts here in East Lansing to bridge the inpatient and outpatient settings using ethics consultation handoffs.
I love puzzle rooms and detective novels. When medicine looks like a puzzle room, I become fascinated as a non-MD aspiring detective. When that medical mystery reveals an ethical problem, I really get in gear, as a clinical (neuro) ethicist.
Reading about the “Mystery of sonic weapon attacks at US embassy in Cuba” made me consider how physicians engage in a puzzle, and how piecing the story together leads to a hypothesis, as if in a puzzle room. Patients with strange and mysterious medical symptoms, suspicious circumstances, and the culprit? Uncertain – inexplicable narratives, patterns, and complaints that do not head in a clear prognostic direction. A story that continues to unravel. Doctors are detectives, and medicine can be a journey through a puzzle room to discover clues about the cause of ailments. Within the story, technology is the enemy but perhaps also a friend; providers embrace technology as it seems to promise a definitive answer.
The ethical problem: We do not make patients privy to the fact that medicine is something of a puzzle room, and that medicine’s technological tools carry substantial uncertainty. Instead, medical technology is presented as offering the path to a concrete solution. Uncertainty is rarely addressed by providers, or presented to patients who pay for expensive technologies, and equally who might suffer under their use. The medical world operates in a political and cultural system, which affects how providers want to see symptoms and technology. Patients get carried along with the tide. The embassy story made me think about the role of a clinical ethicist. Who challenges the patient, who challenges the doctor, who challenges the technology? Should clinical ethicists be detectives too?
What is/was going on in the Cuba case? Early news storiesreported that a sonic weapon might have harmed American diplomats. Diplomats claimed hearing loss, speech problems, vision issues and nausea after perceiving high-pitched noises and thumps. Canadian diplomats (and their children!) might have been harmed too. Reports indicated uncertainty about the culprit: “None of this has a reasonable explanation.” Experts submitted that no detrimental sonic weapon with this power had yet been developed. However, plagued by symptoms, diplomats were called back for safety reasons; reasonably, they were not expected to endure permanent threats to their health, lives and livelihood.
Since the diplomats had not experienced blunt trauma, their condition was baffling. Research, as JAMA published, suggested that many of the 21 study participants showed various “objective” signs that could indicate neurologic injury, i.e., symptoms often found in individuals post-concussion. About the culprit, the authors stated: “The unique circumstances of these patients and the consistency of the clinical manifestations raised concern for a novel mechanism of a possible acquired brain injury from a directional exposure of undetermined etiology.” Per the study, MRI findings indicated a shift change in white matter, possibly suggesting a neurological foundation to the problem.
Critics of the study were less sure (see references 3, 5, 6, and 8 below). They questioned the MRI tool and laid out different approaches to the puzzle, in full public view. Critical analysists, including a Cuban author, labeled the symptoms as potentially psychosomatic, the result of a conversion disorder. Suggesting a mass-psychogenic illness, the authors submitted that the hype around Cuba generated a “bias,” creating anxiety and hypersensitivity. They contested the finding’s objectivity as based on self-report or subjective interpretations of the researchers. Hence objective conclusions were elusive. Critics offered that: “Medical diagnosis at any given time depends to some extent on the current state of scientific knowledge, historical and cultural context, and the framework through which a disease is conceptualized.” However, this context was explicitly ignored by another expert who favored a physical approach. In a Neurology Today article by Dan Hurley, Dr. Terry Fife stated: “Just because an MRI is normal doesn’t mean everything else is normal. Many conditions in the past that we thought were subjective turned out to be quite real.”
Image description: a black silhouette of a figure walking, the figure’s head is a puzzle piece. The figure is against an orange background. Image source: Thomas Hawk/Flickr Creative Commons.
Intrigue around the sonic attacks made me consider how mechanistic conclusions are rarely called into question. In this case, the critical perspective came from fellow physicians, which is reassuring; the system does not often question mechanistic truths. I wonder what mechanisms exist in the real life clinic? I hear about cases in which the most powerful physician might reference MRI results, and oppose the withdrawal of life support. Contrary to the whole team of other providers, who describe the clinical picture as awful and exacerbating the patient’s suffering, as well the family, who indicate that the patient would not want continued life support, the physician objects to withdrawal, stating that the MRI tool does not confirm the clinical picture; this physician wishes to continue full steam ahead. Without questioning his tool (i.e., the MRI), or the technological questions of his colleagues, the patient is unreasonably made to suffer.
Tools to facilitate any type of “certainty,” like MRIs, are popular reference points used to instill trust in our patients and our families. Just as the detective’s magnifying glass stands for scrutiny and expertise, the stethoscope stands for the physician’s trustworthiness. In foggy medical settings, heart monitors and MRI machines are powerful symbols to generate certainty and clarity. The health care setting presents them as supersonic tools. In cases where the results are questioned, the setting proposes that the patient must be “wrong” and not the technology. As illustrated in the Cuban diplomats’ case, the alternative explanation for their symptoms goes straight to mass psychogenic illness. Instead of having a somatic origin, because we could not view something, the symptoms must be caused by a mental state.
What is the role of a clinical ethicist within this culture? The story made me consider how much we need to walk into the medical puzzle room. Especially where medical tools are obstacles because of their presumed “definitive” clarity. Where physicians ignore questionable methodologies, should ethicists then be the detective? Pull out their magnifying glass, and use their tools of critical questions? Who should ask what is real and what is not? Whose role is it to challenge the patient, the doctor, the technology?
Marleen Eijkholt, JD, PhD,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 Ethics Consultant at Spectrum Health System.
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Episode 8 of No Easy Answers in Bioethics is now available! This episode on organ donation models features Center Assistant Professor Dr. Marleen Eijkholt and Center Professor Dr. Len Fleck. Combining their clinical ethics and health policy expertise, they sat down together to discuss ethical issues within current organ donation models, stemming from recent legislation passed in the Netherlands to implement an opt-out system of organ donation. Drs. Fleck and Eijkholt discuss positive and negative aspects of opt-out and opt-in systems, also drawing from other countries around the world. Additionally they discuss reasons why individuals may choose not to be organ donors, and the types of situations that can emerge at the bedside when grieving individuals do not want their loved one’s organs to be donated.
This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: “While We Walk (2004)” by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License. Full transcript available.
About: No Easy Answers in Bioethics is a podcast series from the Center for Ethics and Humanities in the Life Sciences in the Michigan State University College of Human Medicine. Each month Center for Ethics faculty and their collaborators discuss their ongoing work and research across many areas of bioethics—clinical ethics, evidence-based medicine, health policy, medical education, neuroethics, shared decision-making, and more. Episodes are hosted by H-Net: Humanities and Social Sciences Online.
References to the human experience of “pain” are common, but those references are often ambiguous and vague. Such ambiguity creates conceptual and practical challenges, especially in the work of clinical ethics consultation. Conceptual challenges arise, for example, from the distinction between pain and suffering. Practical challenges arise from tensions between objective and subjective components of pain, and clinical ethical challenges arise in cases like Charlie Gard’s. Here, on the one hand, the court argued that Charlie was in such extreme pain and suffering, he should be allowed to die. Alternatively, others stated that we could not truly know about the experience of his pain, and that treatment therefore should be made available. While pain is a relevant clinical problem, it is also a social construct shaped by culture, environment and gender. These distinctions however get lost in a simple “pain” reference. With several clinical ethics scenarios, Dr. Eijkholt will ask if references to pain help us with anything, or if we should perhaps abandon pain as a “useless concept.”
Join us for Dr. Eijkholt’s lecture on Wednesday, March 14, 2018 from noon until 1 pm in person or online.
Marleen Eijkholt, JD, PhD, is and Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Obstetrics, Gynecology and Reproductive Biology at the Michigan State University College of Human Medicine. Dr. Eijkholt focuses on a wide range of Ethical, Legal and Social Implications (ELSI) in health care ethics, including neurotechnology, reproductive medicine, clinical medicine and clinical research. Her work is eclectic like her background, including projects on pain, placebos, and reproductive rights, or deep brain stimulation, and experimental treatments like stem cells. She combines ethical, legal and philosophical theories in her research and scholarship. Additionally, she engages these in her professional life as an ethics consultant at Spectrum Health System. Dr. Eijkholt also contributes her expertise to the College of Human Medicine’s Shared Discovery Curriculum.
In person: This lecture will take place in C102 East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.
Center Assistant Professor Dr. Marleen Eijkholt co-authored the chapter “Ethics in Surgical Research and Publication” in Ethical Issues in Surgical Care, a fall 2017 publication from the American College of Surgeons Division of Education. Dr. Eijkholt’s co-authors are Lance K. Stell, MA, PhD, FACFE, and Richard B. Reiling, MD, FACS.
Chapter summary: Surgical research is the foundation of evidence-based surgical practice. The question “what makes research ethical?” entails particular challenges for surgical research. For example, uncertainty and controversy exist in areas of research methodology, given the unique circumstances of each surgical intervention. Placebo control groups and randomization practices, too, raise major methodological issues in surgical research. This chapter discusses controversies in surgical research and publication thereof. The chapter follows the submission of a hypothetical research study through the institutional review board, to highlight areas of ethical controversy, and describe such issues too for the publication of such studies.
Center Assistant Professor Dr. Marleen Eijkholt has a new article in the Winter 2017 issue of Narrative Inquiry in Bioethics. Authored by Dr. Eijkholt, Jane Jankowski, and Marilyn Fisher, the article is titled “Screen Shots: When Patients and Families Publish Negative Health Care Narratives Online.”
Abstract: Social media sites and their relationship to health care is a subject of intense debate. Common discussions regarding social media address patient privacy, or e-professionalism. This case study explores the tensions that arise for health care providers when negative patient statements surface in social media and blog forums. Recognizing that patients and families often find relief in sharing personal illness narratives, we contemplate if, and how, individual health care professionals and institutions should address complaints aired in public, unmoderated media. Our discussion begins by presenting a case of a family blogging on the Internet to share grievances (to deidentify the case, we have changed some details). Next, we offer an exploration of the impact on health care delivery when professionals become aware of specific criticisms published online. Strategies for managing electronic criticisms are then proposed. We conclude by proposing a novel E-THICS approach to address negative patient expressions via electronic word of mouth (eWOM). Our examination of this evolving issue focuses on maintaining satisfactory relationships between health care providers and patients/families when dealing with health care narratives published in open online media.
The full text is available online through Project MUSE/Johns Hopkins University Press (MSU Library or other institutional access may be required to view this article).
Center Assistant Professor Dr. Marleen Eijkholt recently traveled to Marquette, MI to present at the Upper Great Lakes Palliative Care & Hospice Conference, hosted by Lake Superior Life Care & Hospice.
The conference brought together a wide variety of providers, including home health and hospice providers. Dr Eijkholt’s presentations touched on two controversial areas, through a mix of practical case samples and some theory. Her first talk, “Ethical dilemmas in advance care planning–Mom isn’t herself,” sought to engage participants with the different advance care planning options in Michigan and throughout the U.S. The presentation explored the challenges that come with advance care planning instruments and their application. In Dr. Eijkholt’s second presentation, “Mom wants to die–Professional and personal ethical dilemmas at the end of life,” the participants discussed different end-of-life scenarios, patient perspectives, and wishes. The presentation and discussion also explored distinctions and strategies for dealing with patient requests at the end of life.
The 19th Annual American Society for Bioethics and Humanities (ASBH) Meeting was held October 19-22 in Kansas City, MO. Center faculty Laura Cabrera, Guobin Cheng, Marleen Eijkholt, Leonard Fleck, Devan Stahl, and Tom Tomlinson attended and presented at the conference. The post below includes abstracts for each presentation (abstracts have been edited for length).
Laura Cabrera, PhD Assistant Professor, Center for Ethics and Humanities in the Life Sciences, Department of Translational Science & Molecular Medicine
Dr. Cabrera participated in a law, public health policy, and organizational ethics paper session, presenting “Centering the Re-Emergence of Psychiatric Neurosurgery: A Cross-National Comparison of Ethical and Societal Concerns in Media Coverage.” Abstract: In light of the dark history of many surgical approaches to treat psychiatric disorders, understanding contemporary trends around the re-emergence of different methods to which patients and the public are exposed is essential to understanding their views and receptivity to them, both for healthcare and society. We conducted an in-depth content analysis of media articles reporting on all types of psychiatric neurosurgery between 1960 and 2015 with a focus on North America (Canada and the USA), Germany and Spain. After manually curating for duplicates and irrelevant returns, 167 Spanish articles, 160 German articles, and 217 articles from North America were analyzed inductively for content and coded for the phenomena of interest. Overall, the tone across articles was positive across interventions; articles retrieved from the German press were generally the most critical of the sample. Identity and privacy were among the few noted ethical and philosophical issues, and again found mostly in German articles. References to earlier forms of psychiatric neurosurgery were common across articles published after 2005. The findings suggest that while modern press reports about psychiatric neurosurgery tend to be positive and reference to historical antecedents are made in contemporary news, there is limited ethical and philosophical reflection. Future studies will further inform the influence of these trends on centering stakeholder values, perceptions of risk, and hope for benefits.
Marleen Eijkholt, JD, PhD Assistant Professor, Center for Ethics and Humanities in the Life Sciences, Department of Obstetrics, Gynecology and Reproductive Biology
Dr. Eijkholt participated in a clinical ethics paper session, presenting “Tools for Trouble: Pain as a Clinical Ethical Torment.” Abstract: Pain is a complex phenomenon that entails many clinical ethical challenges. Heterogeneity of providers and patients in the USA makes the context of pain treatment a hotbed for troubling practices. The current spotlight on the “opioid epidemic” reveals some of these challenges. For example, an increasing amount of requests relate to questions about the provider obligations in pain management, specifically for uninsured patients who are of an ethnic minority group. Restrictive guidelines reduce the epidemic to a biomedical pain treatment problem and do not address pain as a social construct, impacted by culture, environment and gender. While anthropological studies examine different ethnic factors contribute to management, perception and expression of pain, the clinical ethical literature is silent on these issues. I ask: What tools exist to address the socially constructed dimensions of pain in the clinic, and how should these be evaluated or developed?
Leonard Fleck, PhD Professor, Center for Ethics and Humanities in the Life Sciences, Department of Philosophy
Dr. Fleck participated in a capacity, informed consent, and the quality adjusted life year paper session, presenting on “Precision QALYs: Precisely Unjust.” Abstract: A recent essay by Heale (Journal of Medical Ethics, 2016) argues for the moral legitimacy (utility and equity) of individualized and personalized QALYs. He contends, for example, that it would be unfair to deny a patient access to $100,000 cancer drug that would give this patient three extra years of life simply because the average patient with that cancer would only gain four extra months of life. He assumes, arguendo, that some biomarker would allow us to identify such a patient before the fact (which is one objective of the precision medicine initiative), and concludes, from a cost-effectiveness perspective, that it would be unjust to deny this patient that drug. I believe this argument is flawed for several reasons. Other justice-relevant considerations, not just cost-effectiveness and utility, are ethically necessary for making many allocation decisions that are “just enough.” “Ragged edges” and clinical uncertainty undermine the practical applicability of his individualized QALYs methodology. Irrelevant personal utilities are given undeserved ethical weight (Heale gives a Jehovah’s Witness example with this consequence). Ethically irrelevant features of an individual are given ethical weight by Heale that results in their being denied access to care from which they would otherwise significantly benefit. To illustrate, a cancer drug whose cost is related to dose size would be cost-effective for a 70 kg person but cost-ineffective for a 90 kg person, though both individuals would otherwise benefit equally. To conclude, precision medicine requires complex considered judgments of health care justice.
Devan Stahl, PhD Assistant Professor, Center for Ethics and Humanities in the Life Sciences, Department of Pediatrics and Human Development
Dr. Stahl led the Christian Theology and Bioethics Affinity Group, discussing the recent book The Finest Traditions of My Calling with the book’s author Abraham Nussbaum. Dr. Stahl was also on the Religion, Spirituality, and Bioethics Affinity Group panel. The group’s focus was religious and spiritual aspects of clinical ethics consultation.
Tom Tomlinson, PhD
Director, Center for Ethics and Humanities in the Life Sciences; Professor, Department of Philosophy Guobin Cheng, PhD Adjunct Associate Professor, Center for Ethics and Humanities in the Life Sciences; Associate Professor, Southeast University, China
Drs. Tomlinson and Cheng participated in a panel session, presenting on “Clinical Ethics in China and the United States: Worlds Apart?” Abstract: China can seem like (half) a world away from the United States. Different political and legal systems, different health care and insurance systems, different culture and social values. The list goes on. So one would not be surprised if similar clinical situations raised very different ethical questions, or led to different ethical conclusions, for different ethical reasons. And indeed this can be true. But one can also find the same questions, the same conclusions, and appeals to the same reasons. It is often claimed that Chinese people place more value on the interests of the family and less on the interests or rights of the individual. Some cases will be designed to explore this hypothesis. Others will aim to surface whether quality of life plays different roles in decisions about continued treatment, and in what ways Chinese and American parents are obligated to protect their child’s best interest in decisions about medical treatment.
No Easy Answers in Bioethics Episode 13
Center Professor Len Fleck and Marleen Eijkholt, former Assistant Professor with the Center, recently presented at the 2018 International Bioethics Retreat, held in Paris, France on June 27-29. The conference has been sponsored by Cambridge University for the past eighteen years.
Center faculty members Marleen Eijkholt and 
This post is a part of our 
Join us for Dr. Eijkholt’s lecture on Wednesday, March 14, 2018 from noon until 1 pm in person or online.
The 19th Annual American Society for Bioethics and Humanities (ASBH) Meeting was held October 19-22 in Kansas City, MO. Center faculty Laura Cabrera, Guobin Cheng, Marleen Eijkholt, Leonard Fleck, Devan Stahl, and Tom Tomlinson attended and presented at the conference. The post below includes abstracts for each presentation (abstracts have been edited for length).
