The Good Samaritan or Non-Directed Donor

From the outset of kidney transplantation, some living donors were “Good Samaritan” donors—that is, individuals who donated a kidney without a specific recipient in mind. However, non-genetically related donors fell out of favor quickly because the results were no better than deceased donor grafts. As immunosuppression improved and graft outcomes from non-biologically related donors improved, attitudes changed (with greater and earlier support from the public than from transplant professionals and with greater support for spouses then friends then acquaintances, and then strangers). This chapter examines ethical controversies raised by Good Samaritan donors using a living donor ethics framework. It examines the moral justification for permitting living donation by strangers, the ethics of the donor and recipient selection and allocation processes, and whether Good Samaritan donors should be encouraged to catalyze a domino multi-donor-recipient pair chain rather than donate to a single candidate on the waitlist.

Developing a Living Donor Ethics Framework

This chapter advances an ethical framework for living donor transplantation. Given the analogies between living donor transplantation and human subjects research, the three principles enumerated in the National Commission’s Belmont Report are adopted as the starting point: respect for persons, beneficence, and justice. Two additional principles are also adopted: the principle of vulnerability and the principle that special relationships create special obligations. Whereas the Belmont Report discussed vulnerable groups, vulnerability is more aptly understood as an assortment of vulnerabilities that may apply to different people in different circumstances at different times of their lives. Eight distinct but overlapping vulnerabilities are described: capacitational, juridic, deferential, social, medical, situational, allocational, and infrastructural. The living donor advocate team (LDAT) stands in special relationship with the potential living donor and supports living organ donation provided that the living donor successfully addresses the challenges to autonomy and voluntariness that these vulnerabilities pose.

The Living Organ Donor as Patient

This is a book about living solid organ donors as patients in their own right. This book is premised on the supposition that the field of living donor organ transplantation is ethical, even if some specific applications are not, eg, pre-mortem organ procurement of an imminently dying patient. When Joseph Murray performed the first successful living kidney donor transplant in 1954, he thought this would be a temporary stopgap. Today, however, the goal of adequate organ supply without living donors remains elusive. If anything, the supply:demand ratio is worse. In this book, a five-principle living donor ethics framework is developed and used to examine the ethical issues raised by living donor selection demographics, innovative attempts to increase living organ donation, and living donor decision-making and risk thresholds. This ethics framework uses the three principles of the Belmont Report modified to organ transplantation (respect for persons, beneficence, and justice) supplemented by the principles of vulnerability and of special relationships creating special obligations. The approach requires that the transplant community fully embraces living organ donors (and prospective living organ donors) as patients to whom special obligations are owed. Only when living organ donors are regarded as patients in their own right and have a living donor advocate team dedicated to their well-being can the moral boundaries of living solid organ donation be determined and realized. This book provides theoretical arguments and practice guidelines, complemented by case studies, to ensure that living donors are given the full respect and care they deserve.

Introduction

This is a book about living solid organ donors as patients in their own right. It is premised on the supposition that the field of living donor organ transplantation is ethical, even if some instantiations are not, eg, pre-mortem organ procurement of an imminently dying patient. In this chapter, the objection to living solid organ donation based on the obligation to do no harm is rejected because it ignores the fact that for many living donors, the benefits outweigh the harms. It is argued that the principle of respect for persons permits some living solid organ donation provided that both the donor and the recipient are treated as patients in their own right. This chapter then provides an outline for the rest of the book in which a five-principle living donor ethics framework is developed and applied to various living donor transplant proposals.

Uneasy Relations: Crime Ethnographies and Research Ethics

This chapter accentuates some of the reasons why crime ethnographies can face difficulties with the ethics review process, including prominent issues relating to informed consent, risk and harm, anonymity, and criminal behavior. Universities in most Western countries have established research ethics boards over the past twenty years responsible for assessing the ethical conduct of research. Qualitative research can fit poorly into the largely positivist ethics framework, resulting in an often-frustrating situation for ethnographers seeking to move ahead with their research. One paradox of this situation is that the ethics process itself seems poised to give rise to a subset of academic deviants in the form of crime ethnographers who may find that they are obliged to circumvent or disregard some formal ethical strictures in order to engage in ethnographic practices that otherwise seem uncontroversial or even innocuous.

Explicability of humanitarian AI: a matter of principles

In the debate on how to improve efficiencies in the humanitarian sector and better meet people’s needs, the argument for the use of artificial intelligence (AI) and automated decision-making (ADMs) systems has gained significant traction and ignited controversy for its ethical and human rights-related implications.Setting aside the implications of introducing unmanned and automated systems in warfare, we focus instead on the impact of the adoption of AI-based ADMs in humanitarian response. In order to maintain the status and protection conferred by the humanitarian mandate, aid organizations are called to abide by a broad set of rules condensed in the humanitarian principles and notably the principles of humanity, neutrality, impartiality, and independence. But how do these principles operate when decision-making is automated?This article opens with an overview of AI and ADMs in the humanitarian sector, with special attention to the concept of algorithmic opacity. It then explores the transformative potential of these systems on the complex power dynamics between humanitarians, principled assistance, and affected communities during acute crises. Our research confirms that the existing flaws in accountability and epistemic processes can be also found in the mathematical and statistical formulas and in the algorithms used for automation, artificial intelligence, predictive analytics, and other efficiency-gaining-related processes.In doing so, our analysis highlights the potential harm to people resulting from algorithmic opacity, either through removal or obfuscation of the causal connection between triggering events and humanitarian services through the so-called black box effect (algorithms are often described as black boxes, as their complexity and technical opacity hide and obfuscate their inner workings (Diakopoulos, Tow Center for Digital Journ, 2017). Recognizing the need for a humanitarian ethics dimension in the analysis of automation, AI, and ADMs used in humanitarian action, we endorse the concept of “explicability” as developed within the ethical framework of machine learning and human-computer interaction, together with a set of proxy metrics.Finally, we stress the need for developing auditable standards, as well as transparent guidelines and frameworks to rein in the risks of what has been defined as humanitarian experimentation (Sandvik, Jacobsen, and McDonald, Int. Rev. Red Cross 99(904), 319–344, 2017). This article concludes that accountability mechanisms for AI-based systems and ADMs used to respond to the needs of populations in situation of vulnerability should be an essential feature by default, in order to preserve the respect of the do no harm principle even in the digital dimension of aid.In conclusion, while we confirm existing concerns related to the adoption of AI-based systems and ADMs in humanitarian action, we also advocate for a roadmap towards humanitarian AI for the sector and introduce a tentative ethics framework as basis for future research.

AOIR ETHICS PANEL 2: PLATFORM CHALLENGES

This panel is one of two sessions organized by the AoIR Ethics Working Committee. It collects five papers exploring a broad (but in many ways common) set of ethical dilemmas faced by researchers engaged with specific platforms such as Reddit, Amazon’s Mechanical Turk, and private messaging platforms. These include: a study of people's online conversations about health matters on Reddit in support of a proposed situated ethics framework for researchers working with publicly available data; an exploration into sourcing practices among Reddit researchers to determine if their sources could be unmasked and located in Reddit archives; a broader systematic review of over 700 research studies that used Reddit data to assess the kinds of analysis and methods researchers are engaging in as well as any ethical considerations that emerge when researching Reddit; a critical examination of the use of Amazon’s Mechanical Turk for academic research; and an investigation into current practices and ethical dilemmas faced when researching closed messaging applications and their users. Taken together, these papers illuminate emerging ethical dilemmas facing researchers when investigating novel platforms and user communities; challenges often not fully addressed–if even contemplated–in existing ethical guidelines. These papers are among those under consideration for publication in a special issue of the Journal of Information, Communication and Ethics in Society associated with the AoIR Ethics Working Committee and AoIR2021.

Integrating Virtue Ethics into Responsible-Conduct-of-Research Programs: Challenges and Opportunities

In response to federal regulations, institutions created a multitude of responsible-conduct-of-research (RCR) education programs to teach novice researchers about ethical issues that may arise in the course of their research and how to avoid or address them. Many RCR education programs strive to help familiarize trainees with some of the areas in which issues in research ethics and integrity develop and help shape trainees into researchers who conduct their work with integrity. However, the compliance aspect of RCR education programs presents fundamental challenges to the programs’ aspirational goals. Adopting a virtue ethics framework can contribute to RCR education programs’ pursuit of those goals by drawing attention to the ways in which researchers’ characters contribute to conducting research with integrity. Further, virtue ethics can contribute to the development of a virtuous researcher through incorporation into both the formal RCR curriculum and through more informal means, such as mentoring.

Ethical issues for e-cigarette control policies in Australia

Although tobacco smoking in Australia is at a historical low, electronic cigarette (e-cigarette) use, especially among the youth is increasing. Policies around e-cigarette control in Australia are currently evolving, even during the pandemic, thus demonstrating its priority status. The current article discusses ethical issues for e-cigarette control policies in Australia using a public health ethics framework. The article is structured using the domains of the WHO-MPOWER framework of tobacco control to enable a comprehensive coverage of all elements of e-cigarette control policies in Australia. It highlights several ethical issues, from different stakeholder perspectives, and indicates moral and ethical tensions in different public health actions that might be considered in framing policies around e-cigarette control.