Should We Reject Donated Organs on Moral Grounds or Permit Allocation Using Non‐Medical Criteria?: A Qualitative Study

Conditional and directed deceased organ donations occur when donors (or often their next of kin) attempt to influence the allocation of their donated organs. This can include asking that the organs are given to or withheld from certain types of people, or that they are given to specified individuals. Donations of these types have raised ethical concerns, and have been prohibited in many countries, including the UK. In this article we report the findings from a qualitative study involving interviews with potential donors (n = 20), potential recipients (n = 9) and transplant staff (n = 11), and use these results as a springboard for further ethical commentary. We argue that although participants favoured unconditional donation, this preference was grounded in a false distinction between ‘medical’ and ‘non‐medical’ allocation criteria. Although there are good reasons to maintain organ allocation based primarily upon the existing ‘medical’ criteria, it may be premature to reject all other potential criteria as being unacceptable. Part of participants' justification for allocating organs using ‘medical’ criteria was to make the best use of available organs and avoid wasting their potential benefit, but this can also justify accepting conditional donations in some circumstances. We draw a distinction between two types of waste – absolute and relative – and argue that accepting conditional donations may offer a balance between these forms of waste.     

ORPHANS BY DESIGN: THE FUTURE OF GENETIC PARENTHOOD

Establishing the nature of genetic parenthood is an important task. This is, firstly, because many people desire that relationship and it is in their interest to know what that is, and secondly, because there is a view that it may incur certain moral obligations between the genetic parent and their child. Many theorists have made attempts to define exactly what genetic parenthood is. I show that these definitions are deficient if they wish to fully capture all reproductive scenarios in ways that are intuitive and/or meaningful. Through a series of cases involving technologies such as cloning and genome editing, we see that in lieu of the traditional two parents, there are possible beings who have no genetic parents, one genetic parent, or many genetic parents. Establishing these cases complicates our understanding of genetic parenthood. From this, we must reconsider current definitions, as well as the usefulness of defining genetic parenthood in these complex cases. Here I do not aim to establish a new definition, but rather to suggest that this complexity makes it necessary to re‐assess the importance of the connection between genetic parenthood and parental obligations and authorities.     

GENETIC TIES: ARE THEY MORALLY BINDING?

Does genetic relatedness define who is a mother or father and who incurs obligations towards or entitlements over children? While once the answer to this question may have been obvious, advances in reproductive technologies have complicated our understanding of what makes a parent. In a recent publication Bayne and Kolers argue for a pluralistic account of parenthood on the basis that genetic derivation, gestation, extended custody and sometimes intention to parent are sufficient (but not necessary) grounds for parenthood. ¹ 1 Bayne, T. & Kolers, A. . Toward A Pluralist Account of Parenthood . Bioethics 2003 ; 17 : 221 – 242 .
Bayne and Kolers further suggest that definitions of parenthood are underpinned by the assumption that ‘being causally implicated in the creation of a child is the key basis for being its parent’. ² 2 Ibid. p. 241.
This paper examines the claim that genetic relatedness is sufficient grounds for parenthood based on a causal connection between genetic parents and their offspring. I argue that parental obligations are about moral responsibility and not causal responsibility because we are not morally accountable for every consequence to which we causally contribute. My account includes the conditions generally held to apply to moral responsibility, i.e. freedom and foreseeability. I argue that parental responsibilities are generated whenever the birth of a child is a reasonably foreseeable consequence of voluntary actions. I consider the implications of this account for third parties involved in reproductive technologies. I argue that under some conditions the obligations generated by freely and foreseeably causing a child to exist can be justifiably transferred to others.     

Intra-Family Gamete Donation: A Solution to Concerns Regarding Gamete Donation in China?

Gamete donation from third parties is controversial in China as it severs blood ties, which are considered of utmost importance in Confucian tradition. In recent years, infertile couples are increasingly demonstrating a preference for the use of gametes donated by family members to conceive children—known as “intra-family gamete donation.” The main advantage of intra-family gamete donation is that it maintains blood ties between children and both parents. To date there is no practice of intra-family gamete donation in China. In this paper, we investigate intra-family adoption in China in order to illustrate that intra-family gamete donation is consistent with Confucian tradition regarding the importance of maintaining blood ties within the family. There are several specific ethical issues raised by intra-family gamete donation. It may, for example, result in consanguinity and the semblance of incest, lead to confused family relationships, and raise concerns about possible coercion of familial donors. Confucian tradition provides a new approach to understand and deal with these ethical issues in a way that Western tradition does not. As a result, we suggest intra-family gamete donation could be an acceptable solution to the problem of infertility in China. However, further discussion and open debates on the ethical issues raised by intra-family gamete donation are needed in China.     

GENETIC ENGINEERING TO AVOID GENETIC NEGLECT: FROM CHANCE TO RESPONSIBILITY

Currently our assessment of whether someone is a good parent depends on the environmental inputs (or lack of such inputs) they give their children. But new genetic intervention technologies, to which we may soon have access, mean that how good a parent is will depend also on the genetic inputs they give their children. Each new piece of available technology threatens to open up another way that we can neglect our children. Our obligations to our children and our susceptibilities to corresponding legal and moral sanctions may be about to explosively increase. In this paper I argue that we should treat conventional neglect and ‘genetic neglect’– failing to use genetic intervention technologies to prevent serious diseases and disabilities – morally consistently. I conclude that in a range of cases parents will have a moral obligation to use genetic treatments to prevent serious disabilities in their children. My particular focus is on prenatal interventions and their impact of the bodily integrity of expectant mothers. I conclude that although bodily integrity constrains moral obligations, it is outweighed in a range of cases.     

Segmented assimilation and socio-economic integration of Chinese immigrant children in the USA

Research on the new second generation has paid much attention to testing one of the hypotheses posed by segmented assimilation theory – downward assimilation into America's underclass – and has neglected to examine other possible outcomes. In this paper, I address a much understudied pathway – assimilation by way of the ethnic community – based on a case study of Chinese immigrant children in the USA. I show that the children of Chinese immigrants have made inroads into mainstream America through educational achievement, not only because of the strong value their parents put on education but also because resources generated in the ethnic community help actualize that value. The Chinese American experience suggests that, in order to advance to the rank of middle-class Americans, immigrant parents have chosen the ethnic way to facilitate children's social mobility and achieved success. Paradoxically, ‘assimilated’ children have also relied on ethnicity for empowerment to fight negative stereotyping of the racialized other.     

The child's best interest in gamete donation

Procreation with donor gametes is widespread and commonly accepted, but it involves ethical questions about the child's best interest. Understanding the historical structures of the moral discussion of gamete donation may contribute to reflecting on the child's best interest. This is why I have analysed the debate on gamete donation in the Netherlands, and this analysis has uncovered some striking discontinuities. Notions of the child's best interest have undergone a radical swing. In the past, it was considered acceptable to conceal the truth about the child's biological origin, but in the past two decades the general opinion has changed to the common belief that this information should be shared with the child. This changed notion of the child's best interest will be analysed using a framework encompassing three views of the child, which derive from the debate on children's rights. These three views each provide a different interpretation of the child's moral and political status. I conclude that the changed notion of the child's best interest results from a view of the child that focuses on autonomy and citizenship, and which frames the child's interests according to its legal status. I comment on this view and I champion an alternative one, namely ‘the embedded child’. This is a relational view based on care ethics that goes beyond what can be articulated in law, and that will help to establish a more balanced interpretation of the child's best interest at the practice and policy levels of gamete donation.     

Empathy,social media,and directed altruistic living organ donation

In this article we explore some of the ethical dimensions of using social media to increase the number of living kidney donors. Social media provides a platform for changing non‐identifiable ‘statistical victims’ into ‘real people’ with whom we can identify and feel empathy: the so‐called ‘identifiable victim effect’, which prompts charitable action. We examine three approaches to promoting kidney donation using social media which could take advantages of the identifiable victim effect: (a) institutionally organized campaigns based on historical cases aimed at promoting non‐directed altruistic donation; (b) personal case‐based campaigns organized by individuals aimed at promoting themselves/or someone with whom they are in a relationship as a recipient of directed donation; (c) institutionally organized personal case‐based campaigns aimed at promoting specific recipients for directed donation. We will highlight the key ethical issues raised by these approaches, and will argue that the third option, despite raising ethical concerns, is preferable to the other two.     

Le principe de l’anonymat du donneur de gamètes à l’épreuve de son contexte. Analyse des conceptions juridiques de l’identité

This study clarifies the lively debate surrounding the anonymity of gamete donors. This principle, which has not been challenged since 1994, is currently criticized by a number of people, who were conceived through medically assisted procreation technologies with donor and who now have reached adulthood. Their testimony has a very significant impact on French public opinion. Several official reports have already suggested that the anonymity of gamete donors may well be removed under certain circumstances. To understand why public opinion has evolved so dramatically, we must revisit the legal position of gamete donors in the specific context of less visible changes in the law. Indeed, the legal concepts of parenthood and identity have been reshuffled over time, and such changes have deeply affected the legal issues relating to the anonymity of gamete donors. Formerly, the law governing the identification of individuals was shaped by political and social objectives. Now it is more concerned with the sense of identity and personal fulfilment of people. This change, based on modern western notions of egalitarianism and individuality, has dramatically affected the outcome of parenthood trials. Moreover, biological tests have made the truth available like never before. The possibility of finding out the truth has shocked the practice of many areas of family law and has created a new set of challenges, especially when the secrecy of the genetic parents has been legally established. In France, women have traditionally been able to deliver their children anonymously. A deadlock has resulted, which may now be overcome by introducing a new concept of personal origins. Now the law is evolving to permit the children to demand their biological mothers’ identity under certain circumstances, but without affecting anyone’s rights. The concept of personal origins has been quite successful on the European scene and has also charged the debate. It is now recognized under French and European laws that individuals must have privileged access to their personal origins. Can the principle of anonymity of gamete donors remain immune from such a (r)evolution ?     

The point of no return: Up to what point should we be allowed to withdraw consent to the storage and use of embryos and gametes?

This article discusses when it is ethically acceptable to withdraw consent for the storage and use of embryos and gametes. Currently, the law in the UK states that consent to use of a gamete or embryo can be withdrawn up to the point of the embryo's transfer to the recipient's uterus or when the gamete is used in providing treatment services; that is, the ‘point of no return’. In this article, we will consider other points of no return and argue that having a single point of no return, a one size fits all form of consent can, in some cases, lead to restrictions on individuals’ autonomy and cause particular types of harm. Therefore, having different points of no return that fit different circumstances could extend autonomy and allow people to enter into agreements that are tailored more to their own particular needs and circumstances.     

The Consequences of Vagueness in Consent to Organ Donation

In this article I argue that vagueness concerning consent to post‐mortem organ donation causes considerable harm in several ways. First, the information provided to most people registering as organ donors is very vague in terms of what is actually involved in donation. Second, the vagueness regarding consent to donation increases the distress of families of patients who are potential organ donors, both during and following the discussion about donation. Third, vagueness also increases the chances that the patient's intention to donate will not be fulfilled due to the family's distress. Fourth, the consequent reduction in the number of donated organs leads to avoidable deaths and increased suffering among potential recipients, and distresses them and their families. There are three strategies which could be used to reduce the harmful effects of this vagueness. First, recategorizing the reasons (commonly referred to as ‘overrules’ under the current system) given by families who refuse donation from registered donors would bring greater clarity to donation discussions. Second, people who wish to donate their organs should be encouraged to discuss their wishes in detail with their families, and to consider recording their wishes in other ways. Finally, the consent system for organ donation could be made more detailed, ensuring both that more information is provided to potential donors and that they have more flexibility in how their intentions are indicated; this last strategy, however, could have the disadvantage of discouraging some potential donors from registering.     

A critique of the principle of ‘respect for autonomy’, grounded in African thought

I give an account how the principle of ‘respect for autonomy’ dominates the field of bioethics, and how it came to triumph over its competitors, ‘respect for persons’ and ‘respect for free power of choice’. I argue that ‘respect for autonomy’ is unsatisfactory as a basic principle of bioethics because it is grounded in too individualistic a worldview, citing concerns of African theorists and other communitarians who claim that the principle fails to acknowledge the fundamental importance of understanding persons within the nexus of their communal relationships. I defend the claim that ‘respect for persons’ is a more appropriate principle, as it is able to acknowledge both individual decision making and the essential relationality of persons. I acknowledge that my preference for ‘respect for persons’ is problematic because of the important debate around the definition of ‘personhood’ in bioethics discourse. Relying on Thaddeus Metz's conception of moral status, I propose a relational definition of personhood that distinguishes between persons with agency and persons without agency, arguing that we have different moral obligations to these distinct categories of persons. I claim that this conception of personhood is better able to accommodate our moral intuitions than conventional approaches, and that it is able to do so without being speciesist or question‐begging.     

Economic empathy in family entrepreneurship: Mexican-origin street vendor children and their parents

ABSTRACT

Research on ethnic entrepreneurship has shown that children of immigrants may experience an economic advantage associated with their entrepreneurial parents’ ‘modes of incorporation’ – the individual, group, and structural opportunities and characteristics that facilitate entrepreneurial participation and consequent economic progress. This ethnographic study examines street vending as a family enterprise and finds that the entrepreneurial, but nevertheless, disadvantaged Latino street vending parents experience economic stagnation. Child street vendors in this study experience compounded disadvantages stemming from their parents’ social locations rooted in unauthorized status, informal work, and stigma, as working together shortens the distance between ‘adulthood’ and ‘childhood’. Yet, street vending also sets the stage for children to develop economic empathy, a resiliency that results from experiencing their parent's position of oppression that helps prevent an authority shift in favour of the children.     

Brain donation: who and why?

Understanding what influences people to donate, or not donate, body organs and tissues is very important for the future of transplant surgery and medical research (Garrick in J Clin Neurosci 13:524–528, 2006). A previous web-based motivation survey coordinated by the New South Wales Tissue Resource Centre found that most people who participated in brain donation were young, female, educated Australians, not affiliated with any particular religion, and with a higher prevalence of medical illness than the general Australian population. It discussed the main motivating factors for brain donation to be “the benefits of the research to medicine and science”. This study has been replicated in a paper-based version to capture a broader cross-section of the general population, to find out who they are and what motivates them to donate. All consented and registered brain donors (n = 1,323) were sent a questionnaire via the post and recipients were given 3 months to complete the questionnaire and return it in a reply paid envelope. Results were entered into the original web-based survey and analyzed using SPSS version 10. Six hundred and fifty-eight questionnaires were returned completed, a response rate of 53%. The results show that people from all age groups are interested in brain donation. The over 65’s are the largest of the groups (30.7%). The majority of the participants were female (60.6%), married (49.2%) with children (65.8%), employed (52.9%) and have a tertiary education (73.3%). They were either non-religious (48.2%) or Christian (41.6%) and were mostly Australian (65.4%). Most (81%) had pledged to donate other organs and tissues for transplantation. The most commonly cited reasons for the donation were to benefit science (27.6%), to benefit medicine (23.9%), a family illness (17.5%) and to benefit the community (16.6%). This study demonstrates that people across all age groups are interested in brain donation. Recruitment of new brain donors could target the over 65 female Australians, who are not religious or Christian and who have also donated other organs and tissues for transplant purposes. It also indicates the need to make donation for research part of the national transplant donation program.     

Making muslim babies: Ivf and gamete donation in sunni versus shi’a islam

Medical anthropological research on science, biotechnology, and religion has focused on the “local moral worlds” of men and women as they make difficult decisions regarding their health and the beginnings and endings of human life. This paper focuses on the local moral worlds of infertile Muslims as they attempt to make, in the religiously correct fashion, Muslim babies at in vitro fertilization (IVF) clinics in Egypt and Lebanon. As early as 1980, authoritative fatwas issued from Egypt’s famed Al-Azhar University suggested that IVF and similar technologies are permissible as long as they do not involve any form of third-party donation (of sperm, eggs, embryos, or uteruses). Since the late 1990s, however, divergences in opinion over third-party gamete donation have occurred between Sunni and Shi’ite Muslims, with Iran’s leading ayatollah permitting gamete donation under certain conditions. This Iranian fatwa has had profound implications for the country of Lebanon, where a Shi’ite majority also seeks IVF services. Based on three periods of ethnographic research in Egyptian and Lebanese IVF clinics, this paper explores official and unofficial religious discourses surrounding the practice of IVF and third-party donation in the Muslim world, as well as the gender implications of gamete donation for Muslim marriages.     

"He won't be my son": Middle Eastern Muslim men's discourses of adoption and gamete donation

In the Sunni Muslim world, religious mandates prohibit both adoption and gamete donation as solutions to infertility, including in the aftermath of in vitro fertilization (IVF) failures. However, both of these options are now available in two Middle Eastern countries with significant Shi'ite Muslim populations (Iran and Lebanon). On the basis of fieldwork in multisectarian Lebanon, I examine in this article attitudes toward both adoption and gamete donation among childless Muslim men who are undertaking IVF with their wives. No matter the religious sect, most Muslim men in Lebanon continue to resist both adoption and gamete donation, arguing that such a child "won't be my son". However, against all odds, some Muslim men are considering and undertaking these alternatives to family formation as ways to preserve their loving marriages, satisfy their fatherhood desires, and challenge religious dictates, which they view as out of step with new developments in science and technology. Thus, in this article I examine the complicated intersections of religion, technology, marriage, and parenthood in a part of the world that is both poorly understood and negatively stereotyped, particularly in the aftermath of September 11, 2001.     

Other people’s children: inclusive parenting in a diversified neighbourhood in Norway

ABSTRACT

This article explores how parents include other people’s children in intensive parenting practices. Increased diversification of Norwegian society calls attention to opportunities for social mobility and the risk of greater inequality. However, insufficient research has been carried out into how parents pursue parenting in such a context. How are parenting practices informed by increased diversity? Why and how do parents become engaged with other people’s children? This study explores the concept of intensive parenting, which researchers view as commonplace among Western middle-class parents, and which leads to individualizing parenting. It argues that for some, intensive parenting also incorporates inclusive parenting – a responsibility not only towards their own child, but a concern for and time investment in other people’s children. This parenting style is linked to a desire to create a more egalitarian society, and a belief that a child’s upbringing and future depends upon the wellbeing of other people’s children.     

‘Bridges to cash’: channelling agency in mobile money

Encountered by mobile money professionals – industry and philanthropic actors seeking to bring mobile phone‐enabled financial products to poor people in the ‘developing world’ – the authors move together with new collaborators to inquire into a problem they had been grappling with for some time. This is the problem of agency; specifically, the agency of ‘mobile money agents’, the people ‘on the ground’ or ‘in the field’ who form a crucial function in permitting others to put cash into an electronic money transfer system and pull cash out of it. These ‘human ATMs’ or ‘bridges to cash’ become the object of analytical scrutiny for mobile money experts and anthropologists. This article takes that analytical scrutiny – and not mobile money agents themselves – as its object. It seeks to understand how ‘agency’ inflects debates over money, its meaning and its pragmatics, and its transformation in new communicative infrastructures, and how it might inform anthropology and political struggles over money and payment.     

Children of the palms: growing plants and growing people in a Papuan Plantationocene

This article explores how ecological change transforms children and child-rearing among Indigenous Marind in West Papua. Marind children become ‘anim ' (persons) by immersing themselves within the ecology of sago palms and their suckers, or ‘sago children’. Conversely, deforestation and oil palm expansion – the defining traits of the place, period, and production mode I term ‘Papuan Plantationocene’ – subvert the mutual maturation of humans and sago by confining children to the oppressive environment of the village and preventing them from supporting sago's growth through sago transplanting and felling. Meanwhile, oil palm itself is alternately characterized by Marind as a vulnerable child subjected to totalizing human control and as a figure of hope for future Marind generations. The article provides a deeper and broader consideration of ‘childhood’ beyond the human in understanding how monocrop capitalist production reconfigures the form and possibility of multispecies social reproduction for people and plants.     

THE CONTRIBUTIONS OF EMPIRICAL EVIDENCE TO SOCIO‐ETHICAL DEBATES ON FRESH EMBRYO DONATION FOR HUMAN EMBRYONIC STEM CELL RESEARCH

This article is a response to McLeod and Baylis (2007) who speculate on the dangers of requesting fresh ‘spare’ embryos from IVF patients for human embryonic stem cell (hESC) research, particularly when those embryos are good enough to be transferred back to the woman. They argue that these embryos should be frozen instead. We explore what is meant by ‘spare’ embryos. We then provide empirical evidence, from a study of embryo donation and of embryo donors' views, to substantiate some of their speculations about the problems associated with requesting fresh embryos. However, we also question whether such problems are resolved by embryo freezing, since further empirical evidence suggests that this raises other social and ethical problems for patients. There is little evidence that the request for embryos for research, in itself, causes patients distress. We suggest, however, that no requests for fresh embryos should be made in the first cycle of IVF treatment. Deferring the request to a later cycle ensures that potential donors are better informed (by experience and reflection) about the possible destinations of their embryos and about the definition of ‘spare embryos’. Both this article, and that by McLeod and Baylis, emphasize the need to consider the views and experiences of embryo donors when evaluating the ethics of embryo donation for hESC research.