Bioethics And The Law: Should Courts Be Allowed To Make End Of Life Decisions? Reflections On The Charlie Gard and Alfie Evans Controversies
This article examines whether courts should have the power to decide to withdraw life-sustaining treatment over the objection of surrogate decision-makers. In doing so, I consider the ways in which giving courts this power might be better for individual patients, but worse for family members and other stakeholders who must live on after the patient’s death. I also examine some of the cultural and historical reasons that handing such power over to courts or other government agencies may be seen as unthinkable in the United States, namely, moral transgressions like the Tuskegee Syphilis Experiments, which have given the public significant reasons to be wary of government intervention in healthcare and life-or-death decisions. Drawing on the Charlie Gard and Alfie Evans cases, bioethical theory, political philosophy, and my experiences as a clinical ethicist, I conclude that courts should not have the power to withdraw life-sustaining treatment over surrogate objection in most cases because doing so creates significant chaos, fear, and distress in patients and their families, and that taking positive stances on end of life issues violates the principles of liberal democracy, under which intimate decisions about the unknown should be left to patients and their surrogates. Unless surrogates are preventing a patient who is very likely to be physically suffering or who wishes to die from doing so, giving courts such power is likely to create significant moral distress that could be avoided or solved by facilitating transparent communication.
Forthcoming in Ethics, Medicine and Public Health.
What Role is “Pure Experience” Consciousness Supposed to Play in Medical Ethics?: Pure Experience, Moral Status, and Clinical Decisions
Laura Specker Sullivan’s article “Pure Experience and Disorders of Consciousness” provides an alternative account of consciousness in medical decision-making. She argues focusing solely on phenomenological consciousness misses the mark in guiding medical decisions for patients with disorders of consciousness. Rather, we should also account for “pure experience” consciousness (PEC), the view that what matters “is the bare existence of subjective experience – that there is something it is like to be you, not the particular quality of what this experience is like nor the objective content of this experience” (Specker Sullivan 2018). In this brief commentary, I argue that PEC is not what matters in medical ethics, as it offers little guidance to decision makers. First, it is unclear what pure experience means beyond baseline brain activity (i.e. the patient is not brain dead). Second, PEC seems to play the same role as moral status: if the patient has PEC (like moral status), they enter into the moral calculus. This is not a novel concept in clinical ethics. While Specker Sullivan may be right that PEC matters, the concept plays the same role as moral status, and does little to help stakeholders beyond reminding them that the patient matters even if he or she has no experiences at the time.
Published June 5th, 2018 in The American Journal of Bioethics, Neuroscience.
Dauber, Michael S. “What Role is “Pure Experience” Consciousness Supposed to Play in Medical Ethics?: Pure Experience, Moral Status, and Clinical Decisions.” AJOB Neuroscience 9, no. 2 (2018): 117-119.
An Analysis of New York State’s Medical Aid in Dying Act (A. 2383A S. 3151)
An amended version of the proposed Medical Aid in Dying Act (A. 2383A S. 3151) was recently filed with the New York State legislature in spring 2018. The bill is designed to legalize a form of voluntary euthanasia for patients with terminal illnesses who wish to end their lives rather than experience unbearable suffering and decline. The bill is modeled after a similar act that legalized physician-assisted suicide in Oregon in 1997, the Death With Dignity Act. This article will provide a brief sketch of the legislative climate surrounding the bill, the content of the bill itself, and an analysis of the views of proponents and critics.
Published May 2018 in Voices in Bioethics: An Online Journal.
Dauber, Michael S. “An Analysis of New York State’s Medical Aid in Dying Act (A. 2383A S. 3151).” Voices in Bioethics: An Online Journal, May 3rd, 2018.
When Doesn’t Potential Consciousness Matter?
In his recent article ““When Does Consciousness Matter? Lessons from the Minimally Conscious State,” Joseph Vukov suggests that potential for consciousness is a salient feature of clinical moral dilemmas. Specifically, he argues that we must consider the consciousness potential of patients with disorders of consciousness (i.e. patients who are minimally consciousness or are in a persistent or permanent vegetative state). He also writes, however, that potential for consciousness might not always be morally salient: salience depends on the specific treatment context and the actual probability of recovery. In this article, I present two challenges to Vukov’s account. First, I suggest that consciousness potential is always morally salient, even if the probability for recovery approaches zero, because the presence of a low probability of recovery still helps inform ethical decision-making. Second, I argue that Vukov’s probability-based account falls subject to vagueness, especially on epistemic accounts of vagueness. Because we have no means of solving epistemic vagueness accurately, we must either treat all patients with disorders of consciousness the same or pick an arbitrary threshold for where potential consciousness matters. To avoid these problems and make potential consciousness clinically meaningful, we need a more robust account of how to solve for vagueness in clinical care and in determining potential for regaining consciousness.
Published March 9th, 2018 in The American Journal of Bioethics, Neuroscience.
Dauber, Michael S. “When Doesn’t Potential Consciousness Matter?.” AJOB Neuroscience 9, no. 1 (2018): 22-24.
Animal Testing and Medical Ethics in Human Head Transplantation
Sergio Cannavero and Xiaoping Ren have made international headlines for their plans to perform the first human head transplant surgery in the near future. They have also claimed that academics and ethicists have unfairly dismissed their work without due consideration, summarily judging that the procedure is unethical. In this brief commentary, I suggest that head transplantation research is unethical because it is impossible to answer important questions about personal identity required to form a good faith basis for treatment based on experiments with non-human animals. Further, Cannavero and Ren unfairly claim that academics and ethicists have dismissed their work, given the fact that they have not provided the clinical information required to fully evaluate whether or not head transplantation would be medically indicated for their test subjects.
Published on November 17th, 2017 in The American Journal of Bioethics: Neuroscience.
Dauber, Michael S. “Animal Testing and Medical Ethics in Human Head Transplantation.” AJOB Neuroscience 8, no. 4 (2017): 212-214.
Cells Are The New Cure by Robin Smith, MD, and Max Gomez, PhD (BenBella Books, Inc., 2017). ISBN 9781944648800.
I review “Cells Are The New Cure: The Cutting-Edge Medical Breakthroughs That Are Transforming Our Health” (BenBella Books) by Robin Smith, MD, and Max Gomez, PhD. The book provides a wide survey of the innovative developments in stem cell therapies and genetic editing techniques that have occurred in recent years, as well as an excellent account of how clinical trials and other research studies are conducted and funded, pointing the way toward the cutting-edge cell-based therapies of the future.
Published with Global Bioethics Initiative, August 25th, 2017.
One Child: Do We Have A Right To More? by Sarah Conly (Oxford University Press, 2016)
I review Sarah Conly’s book One Child: Do We Have A Right To More?, which considers arguments for and against limitations on the number of children we can have, both legally and ethically. While many people believe we have an inviolable right to have as many children we want, Conly argues that we are not within our rights when we commit actions that put others in danger. Reducing the global population will drastically reduce the continued damage we do to our planet and make human life more sustainable. Further, Conly believes that we can overcome concerns over sex-selection and other practical worries.
Published in Dialogue, April 2016.
University Academic Blogs and Professional Publications
Social Media, Privacy, and Research: A Muddled Landscape
The advent of social media technology has opened many new avenues of research in population health, demographics, psychology, and the social sciences. It is crucial to consider whether researchers conducting observational research using social media need to obtain consent from their research subjects, and whether the current research regulations in the United States establish effective, ethical procedures for obtaining consent for such studies. This article explores judicial precedent on social media privacy and current ethical guidelines for research in the social sciences. I suggest that researchers should obtain consent before recording information on high risk behaviors even if those behaviors occur in digital public spaces.
Published with The Hastings Center Bioethics Forum, July 9th, 2018.
The Real Problem With Human Head Transplantation
In this article, I suggest that the true problem with the development of human head transplantation techniques lies in the lack of regulations to actually prevent such research from occurring. While many Western institutions have rejected Xiaoping Ren and Sergio Canavero’s head transplant experiments, it is currently possible to skirt professional ethics regulations by traveling abroad to conduct one’s work at sympathetic institutions. I write that “while it is important to allow different countries and cultures to base their bioethical systems on their own perspectives, it is also crucial to cede some ground to the reasoned opinions of medical experts and bioethicists when there is overwhelming consensus that a proposed action is dangerous and unethical. If a researcher can simply travel to another country to perform techniques widely condemned by leading experts in their field, we need to seriously question whether or not our societies take respecting human value seriously.”
Published with Practical Ethics: Ethics In The News (Oxford University’s Uehiro Center for Practical Ethics), December 4th, 2017.
Track Authorities Are Wrong To Ban Women With Naturally High Testosterone Levels
Athletes with hyperandrogenism have testosterone levels that are naturally higher than what is generally considered the “normal” range for a person to have. The International Association of Athletics Federations will soon debate a rule that forbids female athletes with hyperandrogenism from competing in events against other women, on the assumption that the advantage their elevated testosterone levels confers is unfair because it approaches the lower end of the typical “male range”. In this article for Oxford University’s Uehiro Center for Practical Ethics’s “Practical Ethics, Ethics In the News,” I argue that the IAAF policy overlooks the central principles of sporting ethics in judging these women to have an unfair advantage. Further, I argue that judging naturally high hormone levels unfair is an arbitrary distinction that ignores other naturally occurring advantages without reason. The IAAF policy thus unfairly discriminates against hyperandrogenistic women, and these athletes should be allowed to compete.
Published with Practical Ethics: Ethics In The News (Oxford University’s Uehiro Center for Practical Ethics), August 22nd, 2017.
Charlie Gard, Compassionate Use, and Single-Payer Health Care
Many critics and analysts have pointed to the Charlie Gard case as an example of the horrors of single-payer health care systems. They claim that Charlie is only in this situation because the hospital will not pay for experimental treatment, and that they won’t pay because of the UK’s single-payer health care system. The reality, however, is that Charlie’s case would be very similar under the laws and policies in America, which does not use a single-payer coverage system. In my article with The Hastings Center Bioethics Forum, I discuss the policies in the U.S. and demonstrate that this case is about quality of life and human suffering, not single-payer health care systems.
Published July 26th, 2017, on The Hastings Center Bioethics Forum.
The Real Problem With Concierge Medicine
Luxury or “concierge” medicine has become increasingly prevalent in the past few years. Concierge practices are private medical services that charge an expensive retainer fee to guarantee more personalized, in-depth care and availability. The proliferation of such practices raises several ethical questions. Do luxury medical practices offer unfair advantages to rich patients? Do concierge practitioners “cheat” the system by cashing out early in their careers and taking spots away from medical school applicants who might have chosen to help many more patients instead? Jon Newlin, C.I.P. and I agree that concierge medical practices are morally problematic in our current healthcare system However, we also believe this is merely a pseudo-problem: the real problem is that we don’t have enough doctors, and the ones we have are not used efficiently.
Published July 14th, 2017 in Becker’s Hospital Review.
Why Charlie Gard’s Case Is So Disturbing To Americans
The case of Charlie Gard, an 11-month-old boy with mitochondrial depletion syndrome, captured the attention of healthcare professionals, international heads of state, and citizens throughout the world. The case involved a complicated legal battle between Charlie’s parents, his legal representative, and the hospital where he was being treated. The state ruled that it would be cruel to force Charlie to continue suffering if there was nothing else that could be done to help him, while his parents contended that there were still experimental treatment options open to him. What many Americans might find disturbing about the case is the idea that a court can order the withdrawal of life support from somebody who has family members present to make decisions on his or her behalf. In this article, I argue that the ethical theories at work in the court’s actions are largely uncontroversial. Rather, what is most alarming about the case is the stark difference between British and American bioethics law.
Published July 13th, 2017 on STAT News.
Opinion: House Approves Bill That Defies Basic Standards Of Medical Ethics
“On May 4th, 2017, the Republicans in the U.S. House of Representatives voted to pass the American Health Care Act, an Act that, if enacted into law, would repeal and replace many central elements of the Affordable Care Act, commonly known as Obamacare. The measure has received widespread criticism from many Democrats and from professional medical associations such as the American Medical Association and the American Cancer Society. Many people have questioned various parameters of the bill.” In this article, I argue that the American Health Care Act contradicts several decades of ethical precedent in bioethics and government practice.
Published May 24th, 2017 with The Gittenstein Institute for Health Law and Policy at Hofstra University.
Criminology and Research Ethics
A recent study involved shooting several pigs in the head to research blood-spatter patterns. I examine what I believe to be the central principles of research ethics and whether or not the study was morally permissible. I argue that there were other ways to conduct the study that would have involved fewer deaths, and that the positive information gained from the study was not enough to justify killing the pigs.