In this series of essays, The Road Less Traveled, noted bioethicists share their stories and the personal experiences that prompted them to pursue the field. These memoirs are less professional chronologies and more descriptions of the seminal touchstone events and turning points that led—often unexpectedly—to their career path.

The use of human embryos in genome editing research has recently been approved in China and the United Kingdom. In Japan, the debate on regulations on genome editing research studies using human embryos is underway, but is becoming increasingly entangled, to the point of deadlock. One main reason for this is the misalignment between the Japanese government and the research communities, in their awareness surrounding these regulations. In this article, we report on this ongoing and entangled debate in Japan concerning the regulations on genome editing technology using human embryos. The most critically needed next step is a grassroots level discussion among various experts such as those in the arts and humanities.

Justice can be approached from many angles in ethical and political debates, including those involving healthcare, biomedical research, and well-being. The main doctrines of justice are liberal egalitarianism, libertarianism, luck egalitarianism, socialism, utilitarianism, capability approach, communitarianism, and care ethics. These can be further elaborated in the light of traditional moral and social theories, values, ideals, and interests, and there are distinct dimensions of justice that are captured better by some tactics than by others. In this article, questions surrounding these matters are approached with the hermeneutic idea of a distinction between “American” and “European” ways of thinking.

Sometimes one’s greatest academic disappointments can have unexpected outcomes. This is especially true when one is trying to change career trajectories or do something that others did not take seriously. My path into neuroethics was an unexpected journey catalyzed in part by constructive disappointment and the disbelief of colleagues who thought that the work I was pursuing nearly two decades prior was a fool’s errand. After all, could anyone—in his or her right mind—ever conceive of waking up a person unconscious from brain injury and getting him to speak? 1

This essay brings together work I have done over the past 10 years: on the nature of ethics, on the purpose of ethics, and on its foundations in a way that, I hope, as E.M. Forster put it, connects “the prose and the passion.” I deploy lessons learned in this process to identify and face what I believe to be crucial challenges to science and to freedom (as defended by, among others, Cicero, Pete Seeger, Bob Dylan, Thomas Hobbes, John Stuart Mill, and Bertrand Russell). Finally I consider threats to freedom of a different sort, posed by the creation and dissemination of “alternative facts” and by what is sometimes called “super” or “full” artificial intelligence (AI).

This article looks at what anarchism has to offer in debates concerning health and healthcare. I present the case that anarchism’s interest in supporting the poor, sick, and marginalized, and rejection of state and corporate power, places it in a good position to offer creative ways to address health problems. I maintain that anarchistic values of autonomy, responsibility, solidarity, and community are central to this endeavor. Rather than presenting a case that follows one particular anarchist theory, my main goal is to raise issues and initiate debate in this underresearched field in mainstream bioethics.

The issue of assisted suicide for those with a “fulfilled life” is being hotly debated in the Netherlands. A large number of Dutch people feel that elderly people (i.e., people who have reached the age of 70) with a “fulfilled life” should have access to assisted suicide. Citizens have therefore requested Parliament to expand the existing legislation that governs euthanasia and physician-assisted suicide. The Dutch constitution does not permit national legislation to be incompatible with higher international (human rights) law. An analysis of the case law of the European Court of Human Rights shows that a person’s right to decide on the time and manner of his or her death should be regarded as an aspect of the right to privacy. Although no positive obligation has been imposed on parties to the European Convention for the Protection of Human Rights and Fundamental Freedoms to facilitate suicide, they may do so, provided that certain conditions are met.

According to a familiar distinction, neuroethics incorporates the neuroscience of ethics and the ethics of neuroscience. Within neuroethics, these two parts have provoked distinct and separate lines of inquiry, and there has been little discussion of how the two parts overlap. In the present article, I try to draw a connection between these two parts by considering the implications that are raised for ethics by scientific findings about the way we make moral decisions. The main argument of the article is that although neuroscience is “stretching” ethics by revealing the empirical basis of our moral decisions and, thereby, challenging our present understanding of the dominant ethical theories, substantial further questions remain regarding the impact that neuroscience will have on ethics more broadly.

This article examines two questions. (1) If prospective living kidney donors knew of the lifetime risk of end-stage renal disease (ESRD) in their remaining kidney, then would they be as willing to give it up? and (2) What should transplant organizations and physicians be telling those who express an interest in donating a kidney about risk? Based on the principle that prospective donors must be fully informed of the risk, I raise the issue of a possible obstacle to closing the gap between the availability and need of transplantable kidneys. Some strategies are offered to address this problem.

This article provides a critique of the monolithic accounts that define justice in terms of a single and often inappropriate goal. By providing an array of real examples, I argue that there is no simple definition of justice, because allocations that express justice are governed by a variety of reasons that reasonable people endorse for their saliency. In making difficult choices about ranking priorities, different considerations have different importance in different kinds of situations. In this sense, justice is a conclusion about whether an allocation reflects the human interests and priorities that are at stake. The article describes how several principles of justice have a legitimate place in medical allocations. To achieve justice within medical practice, professionals should focus on the human interests and compelling reasons for prioritizing specific principles within their specific medical domain.

In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in 2005, the regulation on active ending of life for newborns was issued. However, more and more physicians and parents have stated that the age gap between these two regulations—children between 1 and 12 years old—is undesirable. These children should have the same right to end their suffering as adults and newborn infants. An extended debate on pediatric euthanasia ensued, and currently the debate is ongoing as to whether legislation should be altered in order to allow pediatric euthanasia. An emerging major question regards the active ending of life in the context of palliative care: How does a request for active ending of life relate to the care that is given to children in the palliative phase? Until now, the distinction between palliative care and end-of-life decisions continues to remain unclear, making any discussion about their mutual in- and exclusiveness hazardous at best. In this report, therefore, we aim to provide insight into the relationship between pediatric palliative care and end-of-life decisions, as understood in the Netherlands. We do so by first providing an overview of the (legal) rules and regulations regarding euthanasia and active ending of life, followed by an analysis of the relationship between these two, using the Dutch National Guidelines for Palliative Care for Children. The results of this analysis revealed two major and related features of palliative care and end-of-life decisions for children: (1) palliative care and end-of-life decisions are part of the same process, one that focuses both on quality of living and quality of dying, and (2) although physicians are seen as ultimately responsible for making end-of-life decisions, the involvement of parents and children in this decision is of the utmost importance and should be regarded as such.