The human desire to be a parent is fundamental to society and surrogacy offers the opportunity of parenthood to those unable to bear a child. But surrogacy is also fraught with legal, religious, ethical, practical and regulatory challenges (Triggs 2015, xi).
This observation by Professor Gillian Triggs aptly highlights the morally and legally vexed area of surrogacy. The practice of surrogacy (and the tensions that it gives rise to) are not new. Surrogacy (and the tensions it gives rise to) has challenged the South Australian Parliament (and others) for decades. This overview of the review process in South Australia highlights the complexities that arise in this area and the challenges around developing a balanced legal framework around surrogacy.

Discussions of the proper role of conscience and practitioner judgement within medicine have increased of late, and with good reason. The cost of allowing practitioners the space to exercise their best judgement and act according to their conscience is significant. Misuse of such protections carve out societal space in which abuse, discrimination, abandonment of patients, and simple malpractice might occur. These concerns are offered amid a backdrop of increased societal polarization and are about a profession (or set of professions) which has historically fought for such privileged space. There is a great deal that has been and might yet be said about these topics, but in this paper I aim to address one recent thread of this discussion: justification of conscience protection rooted in autonomy. In particular, I respond to an argument from Greenblum and Kasperbaur (2018) and clarify a critique I offered (2016) of an autonomy-based conscience protection argument which Greenblum and Kasperbaur seek to improve and defend. To this end, I briefly recap the central contention of that argument, briefly describe Greenblum and Kasperbaur’s analysis of autonomy and of my critique, and correct what appears to be a mistake in interpretation of both my work and of autonomy-based defenses of conscience protection in general.

In many ways, grief is thought to be outside the realm of bioethics and clinical ethics, and grieving patients or family members may be passed off to grief counselors or therapists. Yet grief can play a particularly poignant role in the ethical encounter, especially in cases of brain death, where the line between life and death has been blurred. Although brain death is legally and medically recognized as death in the United States and elsewhere, the concept has been contentious since its inception in 1968. Yet in most cases, families are not allowed to reject the determination of brain death. Apart from religious exemptions, families have no recourse to reject this controversial determination of death. This paper explores the role of grief in brain death determinations and argues that bioethics has failed to address the complexity of grief in determinations of brain death. Grief ought to have epistemological weight in brain death determinations because of the contested nature of the diagnosis and the unique ways in which grief informs the situation. Thus, I argue that, in some rare cases, reasonable accommodation policies should be expanded to allow for refusals of brain death determinations based on the emotional and moral force of grief. By drawing on ethnographic accounts of grief in other cultures, I problematize the current procedural and linear understandings of grief in brain death determinations, and I conclude by offering a new way in which to understand the case of Jahi McMath.

The rise of surrogacy in India over the last decade has helped individuals across the world to realize their parenting aspirations. In the macro-context of poverty in India and the hierarchical and patriarchal family set-up, concerns are expressed about coercion of women to participate in surrogacy. While the ethical issues engulfing surrogacy are widely discussed, not much is known about the role women play in the decision-making to participate in surrogacy. The paper aims to addresses this gap and is based on a part of a larger ethnographic study conducted at a surrogacy clinic in Anand, Gujarat, India. We explored experiences of forty-one surrogate mothers using in-depth interviews and analysed the narratives to identify women’s own perceived role in the decision-making to participate in surrogacy. Narratives describing the decision-making process were identified and treated as a preliminary unit of analysis. We examined the use of singular and plural pronouns like “I,” “me,” and “mine” versus “we,” “us,” and “our,” along with the use of active and passive voice to determine whether women assumed responsibility for the decision to participate in surrogacy or they attributed the decision to others. Findings unravelled the complexities of the decision-making process and indicated that eighty-five percent of the women played an active role in the decision-making to participate in surrogacy, albeit with new avenues of exploitation in the commercial market space and raised serious bioethical concerns.

The burdens of resource constraints in publicly funded healthcare systems urge decision makers in countries like Sweden, Norway and the UK to find new financial solutions. One proposal that has been put forward is co-payment—a financial model where some treatment or care is made available to patients who are willing and able to pay the costs that exceed the available alternatives fully covered by public means. Co-payment of this sort has been associated with various ethical concerns. These range from worries that it has a negative impact on patients’ wellbeing and on health care institutions, to fears that co-payment is in conflict with core values of publicly funded health care systems. This article provides an overview of the main ethical issues associated with co-payment, and ethical arguments both in support of and against it will be presented and analyzed.

This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others (FBO). A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has worsened over time. Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide (PAS). The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents.

This article empirically examines how healthy volunteers evaluate and make sense of the risks of phase I clinical drug trials. This is an ethically important topic because healthy volunteers are exposed to risk but can gain no medical benefit from their trial participation. Based on in-depth qualitative interviews with 178 healthy volunteers enrolled in various clinical trials, we found that participants focus on myriad characteristics of clinical trials when assessing risk and making enrolment decisions. These factors include the short-term and long-term effects; required medical procedures; the type of trial, including its design, therapeutic area of investigation, and dosage of the drug; the amount of compensation; and trust in the research clinic. In making determinations about the study risks, participants rely on information provided during the consent process, their own and others’ experiences in clinical trials, and comparisons among studies. Our findings indicate that the informed consent process succeeds in communicating well about certain types of risk information while simultaneously creating lacunae that are problematically filled by participants through their collective experiences and assumptions about risk. We discuss the ethical implications of these findings and make recommendations for improving the consent process in healthy volunteer trials.

Cancer is the second leading cause of death in developed countries, making it a global public health problem. In this scenario, early detection is the key to successful treatment. Tissue biopsy, the current gold standard for cancer diagnosis, offers reliable results, but it is feasible only when the mass becomes detectable. On the other hand liquid biopsy, a promising experimental system, not yet implemented within clinical practice, allows early detection as its functioning relies on the analysis of body fluids. Yet, its results are less reliable if compared to those of tissue biopsy as, for instance, false positives and false negatives might occur. Despite technical features, the tradeoff between a reliable diagnosis available at a later time and a potentially less reliable diagnosis available at an early stage poses significant ethical challenges in the clinical scenario which involve, among other aspects, informed consent, communication, and patient-physician encounter.

Human germline gene editing is often debated in hypothetical terms: if it were safe and efficient, on what further conditions would it then be ethically acceptable? This paper takes another course. The key question is: how can scientists reduce uncertainty about safety and efficiency to a level that may justify initiation of first-time clinical trials? The only way to proceed is by well-designed preclinical studies. However, what kinds of investigation should preclinical studies include and what specific conditions should they satisfy in order to be considered well-designed? It is argued that multispecies and multigenerational animal studies are needed as well as human embryo editing without implantation. In order to be possible to translate to first-time clinical trials, animal studies need to satisfy strict conditions of validity. Moreover, embryo studies intended for translation to first-time clinical trials need to correspond to the animal studies in experimental design (with exception of implantation). Only in this way can uncertainty about risk for harm (safety) and prospect of benefit (efficiency) in first-time clinical trials be reduced to a modest level. If uncertainty is not reduced to such a level, first-time clinical trials in germline gene editing should not be initiated.

Social justice has been identified as a foundational moral commitment for global health research ethics. Yet what a commitment to social justice means for community engagement in such research has not been critically examined. This paper draws on the rich social justice literature from political philosophy to explore the normative question: What should the ethical goals of community engagement be if it is to help connect global health research to social justice? Five ethical goals for community engagement are proposed that promote well-being, agency, and self-development, particularly for those considered disadvantaged and marginalized. The paper also considers how key terms used in the proposed goals should be defined using existing theories of health and social justice. This analysis is done to give global health researchers and their partners a better idea of what the ethical goals mean. Patterns of convergence amongst different theories are identified that support relying on particular definitions of key terms.

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen individual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population.

Our world is a world in which biotechnological tools are used by parents and healthcare providers to engineer future babies’ bodies according to their wishes, a world in which there is no clear distinction between children as parents’ “property” and children as autonomous beings, where children are exploited economically, politically, physically, and emotionally by adults, and where, in democratic countries, immigrants’ children are taken prisoner and separated from their families because they dare to cross state borders. In such a world, Claudia Wiesemann’s book, Moral Equality, Bioethics, and the Child (2016), is extremely relevant and important. In her work, the author seeks to establish moral equality for children and at the same time delineates crucial ethical foundations for our moral human existence. The reader is taken through a theoretical, practical, and emotional journey that brings together ethical and bio-ethical dilemmas from the perspectives of both the child and the adult.