Over the past years, a growing number of countries have legislated open-identity donation, in which donor-conceived offspring are given access to the donor’s identity once the child has reached maturity. It is held that donor anonymity creates identity problems for such children similar to the “genealogical bewilderment” described within the adoption context. The study of the social and psychological effects of open-identity donation is still very much in its infancy, but what has been (...) left unquestioned is whether offering access to the donor’s name and address is an adequate response to such effects. This study has two goals: First, we aim to provide a systematic review of the reasons why donor-conceived offspring want to know the identity of their sperm donor. Second, we examine to what extent the provision of donor-identifying information can satisfy the reasons mentioned. The most important motivations appear to be: to avoid medical risks and consanguineous relationships; to satisfy curiosity; to learn more about the self or to complete one’s identity; to learn more about what kind of person the donor is ; to form a relationship with the donor and/or his family; and to learn about one’s ancestry/genealogy. Our analysis shows that for nearly all of these reasons access to the donor’s identity is not necessary. In those cases where it is, moreover, donor identification is not sufficient. What is really needed is contact with the donor, rather than the mere provision of his name. (shrink)

The disclosure of information that identifies deceased organ donors and/or organ transplant recipients by organ donation agencies and transplant centres is regulated in Australia by state and territory legislation, yet a significant number of donor family members and transplant recipients independently establish contact with each other. To describe and synthesize Australian laws and guidelines on the disclosure of identifying information. Legislation and guidelines relevant to organ donation and transplantation were obtained following a search of government and DonateLife network websites. (...) Information about the regulation of identity disclosure was extracted and synthesised using a process guided by Walt and Gilson’s (1994) policy analysis framework. Nineteen documents were examined. Six guidelines refer to and were consistent with current legislation. Four documents did not address identity disclosure. All jurisdictions prohibit healthcare professionals from disclosing identifying information. In three states, the prohibition extends to all members of the public including donor family members and transplant recipients. Restrictions on identity disclosure have implications for public promotion of donation and transplantation where sharing of stories and images of organ donors and transplant recipients is common. Further research is required to understand the perspective of donor family members, transplant recipients, and healthcare professionals impacted by the current laws. (shrink)

Countries that abolished donor anonymity have imposed age limits for access to certain types of information by donor offspring. In the UK and the Netherlands, a debate has started on whether these age limits should be lowered or abolished all together. This article presents some arguments against lowering the age limits as a general rule for all donor children. The focus is on whether one should give a child the right to obtain the identity of the (...) donor at an earlier age than is presently stipulated. The first argument is that there is no evidence that a change in age will increase the total well-being of the donor offspring as a group. The second argument stresses that the rights language used for the donor-conceived child isolates the child from his or her family and this is unlikely to be in the best interest of the child. Finally, lowering the age limit reintroduces the genetic father in the family and expresses the bionormative ideology that contradicts gamete donation as a practice. (shrink)

The possibility of a human head transplant poses unprecedented philosophical and neuroethical questions. Principal among them are the personal identity of the resultant individual, her metaphysical and social status: Who will she be and how should the “new” person be treated - morally, legally and socially - given that she incorporates characteristics of two distinct, previously unrelated individuals, and possess both old and new physical, psychological, and social experiences that would not have been available without the transplant? We contend (...) that this situation challenges linguistic conventions and conceptual binaries, and calls into question the major philosophical approaches to personal identity: animalism and reductionism. We examine these views critically vis-a-vis head transplantation and conclude that they fail to provide an adequate account of the identity of the resultant individual because both neglect the key role of embodiment for personal identity. We maintain that embodiment is central to personal identity and a radical alteration of the body will also radically alter that person, making her a different person. Consequently, a human head transplant will result in an individual partly continuous with the head/brain, and partly continuous with the body donor. We conclude that the resultant person would be different from both the individual whose head was transplanted and the one to whose body the “new” head is attached. (shrink)

The issue of genetic inheritance, and particularly the contradictory rights of donors, recipients and donor offspring as to the disclosure of donor identities, is ethically complicated. Donors, donor offspring and parents of donor offspring may appeal to individual rights for confidentiality or disclosure within legal systems based on liberal rights discourse. This paper explores the ethical issues of non-disclosure of genetic inheritance by contrasting two principle models used to articulate the problem—liberal and communitarian ethical models. It (...) argues that whilst the latter provides a more constructive avenue to providing an ethics for donation than the competing and contradictory positions represented in a liberal rights approach, it raises issues of ethical judgement and authority that remain problematic. This ethical discussion is supported by a field study, funded by the Wellcome Trust, exploring the perceptions and experiences of recipients of donor sperm and their partners towards donor anonymity. The field study provides the empirical basis of an argument for making ethical judgements on the grounds of the community good rather than individual rights, that nevertheless recognises that both are inherently problematic. (shrink)

Since its inception, donor conception practices have been a reproductive choice for the infertile. Past and current practices have the potential to cause significant and lifelong harm to the offspring through loss of kinship, heritage, identity, and family health history, and possibly through introducing physical problems. Legislation and regulation in Australia that specifies that the welfare of the child born as a consequence of donor conception is paramount may therefore be in conflict with the outcomes. Altering the (...) paradigm to a child-centric model, however, impinges on reproductive choice and rights of adults involved in the process. With some lobby groups pushing for increased reproductive choice while others emphasise offspring rights there is a dichotomy of interests that society and legislators need to address. Concepts pertaining to a shift toward a child-centric paradigm are discussed. (shrink)

As genetic knowledge continues to strengthen notions of identity in Euro-American societies and beyond, epigenetic knowledge is intervening in these legitimation frameworks. I explore these interventions in the realm of assisted reproduction—including adoption, donor conception, and gestational surrogacy. The right to identity is protected legally in many states and receives due attention in public and private international law. Originating from the context of adoption, donor-conceived and surrogacy-born persons have recently demanded the same protections and focused on (...) the right to genetic knowledge. This article explores possible implications of epigenetic knowledge on identity. I start by articulating the deep influence of genetics on the notion of identity, and how this unfolds in legal contexts. Next, I examine how epigenetic findings that stress the importance of seeing biological life as situated and embedded in environments can challenge how adoption, donor conception, and gestational surrogacy are experienced and understood. While I argue that epigenetic knowledge can reify identity with the same determinism underpinning genetics, it can also allow for more biosocial understandings of identity that consider history and experience as entangled with biology. (shrink)

An analysis of the identity issues involved in facial allograft transplantation is provided in this paper. The identity issues involved in organ transplantation in general, under both theoretical accounts of personal identity and subjective accounts provided by organ recipients, are examined. It is argued that the identity issues involved in facial allograft transplantation are similar to those involved in organ transplantation in general, but much stronger because the face is so closely linked with personal identity. (...) Recipients of facial allograft transplantation have the potential to feel that their identity is a mix between their own and the donor’s, and the donor’s family is potentially likely to feel that their loved one “lives on”. It is also argued that facial allograft transplantation allows the recipients to regain an identity, because they can now be seen in the social world. Moreover, they may regain expressivity, allowing for them to be seen even more by others, and to regain an identity to an even greater extent. Informing both recipients and donors about the role that identity plays in facial allograft transplantation could enhance the consent process for facial allograft transplantation and donation. (shrink)

ABSTRACTBrazil has not yet approved legislation on assisted reproduction. For this reason, clinics, hospitals and semen banks active in the area follow Resolution 1358/92 of the Conselho Federal de Medicina, dated 30 September 1992. In respect to semen donation, the object of this article, the Resolution sets out that gamete donation shall be anonymous, that is, that the donor and recipients shall not be informed of each other's identity. Thus, since recipients are unaware of the donor's (...) class='Hi'>identity, semen banks and the medical teams involved in assisted reproduction become the intermediaries in the process. The objective of this article is to show that, in practice, this represents disrespect for the ethical principles of autonomy, privacy and equality. The article also stresses that the problem is compounded by the racial question. In a country like Brazil, where racial classification is so flexible and goes side by side with racist attitudes, the intermediary role played by semen banks and medical teams is conditioned by their own criteria of racial classification, which are not always the same as those of donors and semen recipients. The data presented in this paper were taken from two semen banks located in the city of São Paulo . At the time of my research, they were the only semen banks in the state of São Paulo and supplied semen to the capital , the state of São Paulo, and to cities in other Brazilian states where semen banks were not available. (shrink)

In the last few decades, assisted reproduction has introduced new challenges to the way people conceive and build their families. While the numbers of donor-conceived individuals have increased worldwide, there are still many controversies concerning access to donor information. Is there a fundamental moral right to know one’s genetic background? What does identity in DC families mean? Is there any relationship between identity formation and disclosure of genetic origins? These questions are addressed by analysing core regulatory (...) discourse. This analysis shows that the notion of narrative identity is suitable for defining and answering these questions. This review analyses the meaning of resemblance in DC families and the way donors are selected following affinity-ties and discusses disclosure strategies and agreements. As a preliminary conclusion, it could be said that, in the field of third-party reproduction, knowing about the donor conception significantly contributes towards the development of a narrative identity and also serves as a moral basis for the child’s right to know. (shrink)

Abstract BACKGROUND: Anonymity remains the more common practice in gamete donations, but legislation prohibiting anonymity with a goal of protecting donor-conceived children's right to know their genetic origins is becoming more common. However, given the dearth of research investigating the function of anonymity for donors and recipients, it is unclear whether these policies will accomplish their goals. The aim of this study was to explore experiences with anonymity among oocyte donors and recipients who participated in an anonymous donor (...) oocyte program and to understand the ways in which anonymity functions for them. -/- METHODS: Semistructured interviews were conducted with 50 women: 28 oocyte donors and 22 recipients who were recruited from an academic center for reproductive medicine in the United States. -/- RESULTS: Donors and recipients view anonymity both as a mechanism to protect the interests of all parties (recipients, donors, and donor-conceived children) and as a point of conflict. Specifically, three key areas were identified where both donors and recipients saw anonymity as having an important role: relieving anxieties about family structures and obligations; protecting their interests and those of donor-conceived children (while acknowledging where interests conflict); and managing the future. -/- CONCLUSION: As gamete donation increasingly moves away from the practice of anonymity, examining why anonymity matters to stakeholders will be helpful in devising strategies to successfully implement identity-release options. (shrink)

In the discussions leading up to the enactment of the UK Human Fertilisation and Embryology Regulations 2015, it was repeatedly emphasised, by many commentators, that maternal spindle transfer and pronuclear transfer did not give rise to children who could be considered as having three or more parents. This was because it was argued that only the genetic material found in the chromosomes should be considered as the determining factor for the formation of parent–child relationships and the resulting kinship identities. In (...) this present study, however, this assertion will be questioned in the light of different kinds and different understandings of kinship identities. It will also be suggested that any person who is partly responsible for the very existence of a child, through any means, may qualify as a causal parent — a parent whom the resulting child may want to identify. As a result, a positive response should be given to a request from a person born from MST and PNT concerning identifying information for all the individuals responsible for bringing him or her into existence. In the light of this, the article will conclude that it is regrettable that the UK government enacted binding legislation making sure that children, born through MST and PNT, will never be able to contact the egg donors and, in the case of PNT, the sperm donors. This reflects a very limited understanding of who parents really are and may give rise to serious long-term psychological distress in the prospective children. (shrink)

The field of human organ transplantation, and most particularly that of heart transplantation where the donor is always deceased, is one in which the rhetoric of hope leaves little room for any exploration or understanding of the more negative emotions and affects that recipients may experience. Where a donated heart is commonly referred to as the ‘gift of life’, both in lay discourse and by those engaged in transplantation procedures, how does this imbricate with the alternative clinical term of (...) a ‘graft’? For recipients of donor organs, the experience of living on in the face of otherwise certain death is fraught with complex emotions, not only about the self and the now dead other, but the persistence of the other within the self. In contrast to our expectations of the feel-good narrative of the gift of life, recipients are often significantly troubled by the aftermath of the procedure, which may fundamentally challenge notions of personal identity, as well as having deep implications for our understanding of the relation between death and ‘staying alive’. Drawing on recent research into heart transplantation, I shall theorise the field through a reflection – drawing on both Mauss and Derrida – on the meaning of the gift, before moving on to consider whether a Deleuzian approach to both the assemblage and the ‘event’ of death might offer a more productive framework. (shrink)

Mitochondrial replacement techniques are intended to avoid the transmission of mitochondrial diseases from mother to child. MRT represent a potentially powerful new biomedical technology with ethical, policy, economic and social implications. Among other ethical questions raised are concerns about the possible effects on the identity of children born from MRT, their families, and the providers or donors of mitochondria. It has been suggested that MRT can influence identity directly, through altering the genetic makeup and physical characteristics of the (...) child, or indirectly through changing the child's experience of disease, and by generating novel intrafamilial relationships that shape the sense of self. In this article I consider the plausibility and ethical implications of these proposed identity effects, but I focus instead on a third way in which identity may be affected, through the mediating influence of the wider social world on MRT effects on identity. By taking a narrative approach, and examining the nature and availability of identity narratives, I conclude that while neither direct genetic nor indirect experiential effects can be excluded, social responses to MRT are more likely to have a significant and potentially damaging influence on the generation of MRT children's narratives of identity. This conclusion carries some implications for the collective moral responsibility we hold to ensure that MRT, if implemented, are practised in ethically justifiable ways. (shrink)

BackgroundSome persons conceived with donor gametes react negatively when they found their birth via donor conception. They request access to information about and seek to communicate with the donor. However, some countries mandate donor anonymity. Other countries allow donor-conceived persons to access donor information, but they can only use this access if their parents have disclosed donor conception to them. We investigated a thorny issue of donor conception: whether donor conception should (...) be shifted from an anonymous basis to a non-anonymous basis.MethodsWe review the issues and concerns regarding donor conception. We then consider the impact of direct-to-consumer genetic testing on donor conception, as well as the influence of donor conception on offspring’s identity and the potential of different types of donors. To discuss the future policy of donor conception, the policies on the anonymity of gamete donors were investigated using publicly-available documents in 15 countries.ResultsThe aim of mandating donor anonymity is to protect the privacy of the donor and intended parents. However, the diffusion of direct-to-consumer genetic testing may make it impossible to maintain anonymity. Birth via donor conception shapes the offspring’s identity, and the donor may further influence the development of offspring’s identity through communications. It remains important to disclose donor conception to donor-conceived offspring and to provide them with donor information. However, that information might be insufficient for some donor-conceived persons. Here are benefits to having open-identity donors and known donors. Such donors can make an agreement with the parents regarding future communication with the offspring, although both sides should respect privacy. Subsequent counseling for all parties involved can result in better tripartite communication agreements.ConclusionsIn sum, ethical and practical issues that complicate donor anonymity are driving a shift to non-anonymous donor conception, in which all parties come to a communication agreement. To pave the way for such a donor conception system, transitional measures can be put into place. For countries that already adopted non-anonymous donor conception, ensuring the communication agreements is important to protect the rights of parents, donor, and offspring. (shrink)

Blood donation is broadly understood to be a public and altruistic act. However, new theories of citizenship and subjectivity suggest that the individual and embodied qualities of blood also need to be taken into account when examining donation. This article examines the relationship between public and private elements of blood donation. Donating blood is not an entirely public act, and does not provide an entirely impersonal resource. The embodied self is integral to public practices, and, equally, public domains are important (...) to the constitution of private spaces. However, this study shows that recognition of the individuality of blood is often cast in moral terms. The exclusion of already marginalized people from donating blood presents a risk of further marginalization. If blood donation is understood to be a civic practice open to everyone, then it becomes too easy to see those who cannot donate as non-citizens. New vocabularies of difference are needed. It is an ongoing necessity that altruistic donors are valued; it is also important that those who cannot donate are not punished by this process of valuing. (shrink)

This article addresses whether cardiopulmonary resuscitation and sustained physiological support should ever be permitted in individuals who are diagnosed as brain dead and who had held previously expressed moral or religious objections to the currently accepted criteria for such a determination. It contrasts how requests for care would normally be treated in cases involving a brain-dead individual with previously expressed wishes to donate and a similarly diagnosed individual with previously expressed beliefs that did not conform to a brain-based conception of (...) death. The paper first focuses narrowly on requests for CPR and then expands its scope to address extended physiological support. It describes how refusing the brain-dead non-donor's requests for either CPR or extended support would represent enduring harm to the antemortem or previously autonomous individual by negating their beliefs and self-identity. The paper subsequently discusses potential implications of policy that would allow greater accommodations to those with conscientious objections to currently accepted brain-based death criteria, such as for cost, insurance, higher brain formulations and bedside communication. The conclusion is that granting wider latitude to personal conceptions around the definition of death, rather than forcing a contested definition on those with valid moral and religious objections, would benefit both individuals and society. (shrink)

An analysis of the identity issues involved in facial allograft transplantation is provided in this paper. The identity issues involved in organ transplantation in general, under both theoretical accounts of personal identity and subjective accounts provided by organ recipients, are examined. It is argued that the identity issues involved in facial allograft transplantation are similar to those involved in organ transplantation in general, but much stronger because the face is so closely linked with personal identity. (...) Recipients of facial allograft transplantation have the potential to feel that their identity is a mix between their own and the donor’s, and the donor’s family is potentially likely to feel that their loved one ‘‘lives on’’. It is also argued that facial allograft transplantation allows the recipients to regain an identity, because they can now be seen in the social world. Moreover, they may regain expressivity, allowing for them to be seen even more by others, and to regain an identity to an even greater extent. Informing both recipients and donors about the role that identity plays in facial allograft transplantation could enhance the consent process for facial allograft transplantation and donation. (shrink)

Joining an antagonistic phosphoinositide (PtdInsP) kinase and phosphatase into a single protein complex may regulate rapid and local PtdInsP changes. This may be important for processes such as membrane fission that require a specific PtdInsP and that are innately local and rapid. Such a complex could couple vesicle formation, with erasing of the identity of the donor organelle from the vesicle prior to its fusion with target organelles, thus preventing organelle identity intermixing. Coordinating signals are postulated to (...) switch the relative activities of the kinase and phosphatase in a spatio‐temporal manner that matches membrane fission events. The discovery of two such complexes supports this hypothesis. One regulates the interconversion of phosphatidylinositol and PtdIns(3)P by joining the Vps34 PtdIns 3‐kinase and the myotubularin 3‐phosphatases. The other regulates the interconversion between PtdIns(3)P and PtdIns(3,5)P2 through the Fab1/PIKfyve kinase and the Fig4/mFig4 phosphatase. These lipids are essential components of the endosomal identity code. (shrink)

Anonymous gamete donation continues to be practised in most jurisdictions around the world, but this practice has come under increased scrutiny. Thus, several countries now mandate that donors be identifiable to their genetic offspring. Critics contend that anonymous gamete donation harms the interests of donor-conceived individuals and that protection of these interests calls for legal prohibition of anonymous donations. Among the vital interests that critics claim are thwarted by anonymous donation are an interest in having a strong family relationship, (...) health interests, and an interest in forming a healthy identity. This article discusses each of these interests and examines what they could involve. The legislation in two countries is considered: Spain, which mandates anonymous gamete donation, and the UK, which prohibits such practice, to assess how these different legislations might or might not protect these vital interests. (shrink)

TheJournal of Medical Ethicspreviously published on the debate in the UK and the Netherlands concerning the legal age limits imposed on donor-conceived people for access to information about the identity of gamete and embryo donors. In that publication, three arguments were foregrounded against lowering these age limits as a general rule for all donor-conceived people. In this contribution, we engage with these arguments and argue why we think they are insufficient to maintain the age limits. In contrast, (...) we argue for a more suited, contextual and relational ethical framework based on care ethics, which emphasises relational autonomy and its dynamic, contextual development. This framework, we argue, provides a comprehensive approach for the analysis we made of the question of age limits and was applied in research performed in the Netherlands, commissioned by the Dutch Minister of Health. The framework enabled us to weigh the multidisciplinary—legal, psychological, phenomenological and ethical—findings of our research. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Gifts and Obligations: The Living Donor as StorytellerPaul Root WolpeThe Illness NarrativeEach of us lives with an inner biographical narrative, the story we tell ourselves about ourselves, the story that becomes our account of who we are. It is the story we have constructed about our life and its meaning, built from memories of our past—our childhood, our parents, our friends, our experiences. We construct that story through (...) our subjective experience and memories of our past, bringing together the disparate parts of our lives and weaving them into a coherent whole by which we make sense of ourselves.Under the pressures of the advent of sudden illness, or in the face of chronic illness that becomes a dominant status, “individuals often feel a pressing need to re-examine and re–fashion their personal narratives in an attempt to maintain a sense of identity” (Bury, 2001, p.264). Illness forces us to re–imagine our life in the face of often sudden new circumstances. Illness narratives about chronic or lifelong illness are not necessarily about suddenly needing to recast one’s life due to new circumstances, but about the need to understand the way chronic illness positions and defines us in the web of social and institutional relationships.The narratives in this collection might be thought of as a peculiar type of illness narrative. The people who populate these stories are not themselves sick (or at least were not when their stories began); yet they are bound up in the medical world, have had their bodies cut open and pieces removed, have had, at times, problematic recoveries and lasting physical and mental challenges. For that reason, the stories of living donors are particularly interesting in the illness narrative literature, and they raise a unique set of questions. Living donors have not discovered a sudden illness that requires re–imagining their lives, nor are they coping with a long illness that has become a thematic frame for how they conceptualize their world. The key aspect that differentiates the living donors’ narratives from the usual illness narratives is volition; the donors have chosen to enter the world of the infirm, have chosen to subject themselves to surgery and medical management, and have chosen to join their stories to someone else’s—and in so doing to become allied to, and yet never fully a part of, the illness narratives of the recipients.Gifting and OwnershipIf it is true that we tell our stories informed by the other stories of our culture, that we must fit our own stories into the narrative resources available in our particular society, then the living donors need to find a cultural frame to make sense of this strange position they find themselves in: joining the world of the sick and infirm not because of intrinsic illness but, to the contrary, because of their relative health. Almost thirty years ago, Renée Fox and Judith Swazey began their ground-breaking work The Courage to Fail (1974) with a clear [End Page 39] statement of the way in which the donor’s role is understood:The donor who offers a part of his body for transplantation is making an inestimably precious gift. The acutely ill patient who receives the organ accepts a priceless gift. The giving and receiving of a gift of enormous value, we believe, is the most significant meaning of human organ transplantation. The extraordinary gift exchange, moreover, is not a private transaction between the donor and the recipient. Rather, it takes place within the complex network of personal relationships that extends to the families, the physicians, and all the members of the medical team who are involved in the operation. Within the network of these relations, a complex exchange occurs through which considerably more than the organ itself is transferred(p. 5).It is the sociological and psychological power of the idea of the gift that makes transplantation an especially evocative case. Eighteen years later, in their second book about organ transplantation, Spare Parts (1992), Fox and Swazey cite their own quote above and comment about it that “Despite all the biomedical and social changes that have ensued within and around the... (shrink)

Over the years a number of countries have abolished anonymous gamete donation and shifted toward open-identity policies. Donor-conceived children are said to have a fundamental “right to know” the identity of their donor. In this article, we trace the arguments that underlie this claim and question its implications. We argue that, given the status attributed to the right to know one's gamete donor, it would be discriminatory not to extend this right to naturally conceived children (...) with misattributed paternity. One way to facilitate this would be through routine paternity testing at birth. While this proposal is likely to raise concerns about the conflicting interests and rights of other people involved, we show that similar concerns apply to the context of open-identity gamete donation. Unless one can identify a rational basis for treating the two groups differently, one's stance toward both cases should be the same. (shrink)

Faith-based Organisations have been at the forefront of a growing interest of the intersection between religion and development. Their value has been recognised as both pragmatic and, perhaps more contentiously, also 'spiritual' in nature because of advantages arising from faith itself. For many FBOs, religion is far more than an 'essential component of identity … it is a source of well-being'. In this manner, FBOs challenge the modernist assumptions of traditional development theory, which view the spiritual and physical domains (...) as separate. In fact, for some FBOs, 'spiritual faith provides the fuel for action'. This paper reports on an aspect of the empirical findings of a South African study and explores both the way in which Christian FBOs understand their Christian identity and the way in which they articulate this through their use of scripture as a motivating or an envisioning tool. (shrink)

Corneal transplantation is the most common form of organ transplantation performed globally. However, of all organs, eyes have the highest rate of refusal of donation. This study explored the reasons why individuals decide whether or not to donate corneas. Twenty-one individuals were interviewed who had made a donation decision (13 refused corneal donation and eight consented). Analysis was performed using Grounded Theory. Refusal of corneal donation was related to concerns about disfigurement and the role of eyes in memory and communication. (...) The request for donation therefore raised concerns about a potential adverse change in the ongoing relationship with the deceased, even in death. For those who refused donation, these concerns overshadowed awareness of need or benefit of transplantation. Adjusting the donation message to be more congruent with the real, lived experience of corneal donation may to some extent “prepare” individuals when the donation question is raised. (shrink)

While in this paper I focus on adoptees, my argument is applicable to donor-conceived children and children of misattributed paternity. I address some of the noted risks of closed adopted and the benefits of open adoption, which is more in keeping with Article 7 of the United Nations Convention on the Rights of the Child (CRC), which provides all children with a right to know about their genetic parents and which the Australian government ratified in 1980.

Xenotransplantation is often deemed morally objectionable because of the costs it imposes on the organ donor and the risks it imposes on the recipient. For some, involving human–pig chimeras as donors makes the practice more objectionable or even abhorrent from the start. For others, by contrast, using such chimeras weakens recipient-based objections because it reduces the risk of organ rejection and malfunctioning, and cancels donor-based objections because the practice does not harm chimeras but instead gives them valuable lives (...) they would not otherwise have. The paper examines and eventually rejects the latter defense. It also discusses the additional risks of chimeric xenotourism in countries with less demanding procedural guidelines and reflects on two very different futures for humanity that may emerge from supporting or rejecting chimeric xenotransplantation. (shrink)

In Conceiving People: Genetic Knowledge and the Ethics of Sperm and Egg Donation (Oxford University Press, 2021), Daniel Groll argues why people who use donated sperm or eggs to have children ought to use a known donor. His main argument for this position is that a child conceived in this way will have a foreseeable, significant interest in acquiring genetic knowledge. However, Groll addresses issues that are of interest to anyone who thinks about the nature of families and parent‐child (...) relationships. For example, what obligations or responsibilities does a parent have to their child? What makes someone a parent? And what is the significance to one's identity of knowing about one's genetic origins? While a claim about access to genetic knowledge lies at the heart of Groll's book, he is all too aware of the social forces that influence people to care about their genetic origins. His prescriptions, ultimately, reflect this reality. (shrink)

ABSTRACT This article considers how five single mothers, who used adoption or donor conception to bring children into their lives, negotiate a persistent and pervasive discourse of ‘problematic single motherhood’ in their interview talk. Tactics of intersubjectivity (Bucholtz & Hall [2005]. Identity and interaction: A sociocultural linguistic approach. Discourse Studies, 7(4–5), 585–614.), especially the overlapping strategies of distinction, authorisation and illegitimation, are shown to be particularly salient for these parents, as they work to legitimise their routes to motherhood (...) by distancing themselves from widely stigmatised positions such as young motherhood, working-class motherhood and unplanned motherhood. I argue that these single women’s intersubjective positioning serves to protect them against stigma and discrimination, but often relies on the reproduction of other polarising and discriminatory discourses, which feed into idealised constructions of mothers as responsible, middle-class, and appropriately aged citizens. Overall, the analysis suggests that it is difficult for these single mothers to challenge the multiple and intersecting discriminatory discourses, ideals and stereotypes that converge in exclusionary and limiting constructions of single motherhood, whilst maintaining a recognisably legitimate social position for themselves. (shrink)

Organs available for transplantation are scarce and valuable medical resources and decisions about who is to receive them should not be made more difficult by complicated calculations of desert. Consideration of likely clinical outcome must always take priority when allocating such a precious resource otherwise there is a danger of wasting that resource. However, desert may be a relevant concern in decision-making where the clinical risk is identical between two or more potential recipients of organs. Unlikely as this scenario is, (...) such a decision procedure makes clear the interdependence of organ recipient and organ donor and hints at potential disadvantages for those who are willing to accept but unwilling to donate organs (free-riders). A combined opting-out and preference system weakens many of the objections to opting-out systems and may make the decision to donate organs on behalf of their deceased relatives easier for families. (shrink)

A short article examining the problems of the fertility industry, commodifying human life and allowing unaccountable third parties to create children in ways that undermine their identity by way of donor conception, human cloning and artificial reproductive techniques.

In “The Ethics of Anonymous Gamete Donation: Is There a Right to Know One's Genetic Origins?,” Inmaculada de Melo‐Martín deconstructs the interests the right is supposed to protect. She argues that these interests are not set back or thwarted when one has no access to one's genetic origins. The basis of her argument is that we lack robust empirical evidence that donor‐conceived individuals suffer certain alleged harms, and that even when such harms are present, they do not provide strong (...) enough justification to ground the right.Indeed, the research on the needs, preferences, and well‐being of donor‐conceived individuals is scant. In fact, we lack robust empirical evidence regarding all aspects of donor conception. I argue, however, that the right to know one's genetic origins does not rest on empirical evidence. Some donor‐conceived individuals who are unable to know their genetic origins may suffer great harms. Others may suffer no harm at all. But all are treated wrongly when they are deprived of the ability to access information about their genetic origins. They are deprived of an important aspect of their autonomy: the liberty to choose what meaning they assign to the genetic components of their identity. (shrink)

Assisted reproduction using donor gametes is a procedure that allows those who are unable to produce their own gametes to achieve gestational parenthood. Where conception is achieved using donor sperm, the child lacks a genetic link to the intended father. Where it is achieved using a donor egg, the child lacks a genetic link to the intended mother. To address this lack of genetic kinship, some fertility clinics engage in the practice of matching the ethnicity of the (...) gamete donor to that of the recipient parent. The intended result is for the child to have the phenotypic characteristics of the recipient parents. This paper examines the philosophical and ethical problems raised by the policy of ethnic matching in gamete donation. I consider arguments for the provision of ethnic matching based on maximising physical resemblance and fostering ethnic identity development. I then consider an argument against ethnic matching based on the charge of racialism. I conclude that while the practice of ethnic matching in gamete donation could promote positive ethnic identity development in donor-conceived children from historically subjugated ethnic minorities, it also risks endorsing the problematic societal attitudes and assumptions regarding ethnicity that enabled such subjugation in the first place. (shrink)

BackgroundConcurrent with efforts to establish national and regional biorepositories in Africa is widespread endorsement of ethics committees as stewards of the interests of individual donors and their communities. To date, ethics training programs for IRB members in Botswana have focused on ethical principles and international guidelines rather than on the ethical dimensions of specific medical technologies and research methodologies. Little is known about the knowledge and concerns of current and prospective IRB members in Botswana with respect to export, reuse, storage, (...) and benefit-sharing of biospecimens.MethodsThis qualitative study examined perspectives of IRB members in Botswana about the collection and use of biospecimens in research. Forty-one IRB members representing five committees in Botswana participated in discussions groups in March 2013. Transcriptions of audiotapes and field notes were analyzed to identify issues of concern that might be alleviated through education and capacity-building, and areas that required ongoing discussion or additional regulatory guidance.ResultsAreas of concern included lack of understanding among patients and providers about the use of biospecimens in clinical care and research; reuse of biospecimens, particularly issues of consent, ownership and decision-making; export of specimens and loss of control over reuse and potential benefits; and felt need for regulatory guidance and IRB-member training. Local belief systems about bodily integrity and strong national identity in the construct of benefits may be at odds with initiatives that involve foreign biorepositories or consider such collections to be global public goods.ConclusionEducation is needed to strengthen IRB-member capacity to review and monitor protocols calling for the collection and use of biospecimens, guided by clear national policy on priority-setting, partnerships, review, and oversight. Engagement with local stakeholders is needed to harmonize fundamentally different ways of understanding the human body and community identity with the aims of contemporary biomedicine. (shrink)

The use of rights based arguments to justify claims that donor offspring should have access to information identifying their gamete donor has become increasingly widespread. In this paper, I do not intend to revisit the debate about the validity of such rights. Rather, the purpose is to examine the way that such alleged rights have been implemented by those legislatures that have allowed access to identifying information. I will argue that serious inconsistencies exist between the claim that (...) class='Hi'>donor offspring have a right to know the identity of their gamete donor and the way such a right is currently met in practice. I hope to show that in systems where non‐anonymous donation is practised, an understanding of the proclaimed right of donor offspring to know their genetic identity is one composed of two different rights – the right to know the circumstances of their conception and the right to information identifying the gamete donor – can provide important insights into this important area of public policy. (shrink)

Abstract I argue that meaning in life is importantly influenced by bioloical ties. More specifically, I maintain that knowing one's relatives and especially one's parents provides a kind of self-knowledge that is of irreplaceable value in the life-task of identity formation. These claims lead me to the conclusion that it is immoral to create children with the intention that they be alienated from their bioloical relatives?for example, by donor conception.

This Article considers the moral and legal status of practices that aim to modify traits in human offspring. As advancements in reproductive biotechnology give parents greater power to shape the genetic constitution of their children, an emerging school of legal scholars has ushered in a privatized paradigm of genetic control. Commentators defend a constitutionally protected right to prenatal engineering by appeal to the significance of procreative liberty and the promise of producing future generations who are more likely to have their (...) lives go well. This 'new eugenics,' however, confronts us with ethical challenges that neither liberal arguments about autonomy, fairness, and consent, nor utilitarian arguments about preferences, happiness, and equality, are able to capture. I begin by analyzing the Supreme Court's modern substantive due process jurisprudence, as it bears on recent advancements and controversies in genetic science. After developing a doctrinal framework that could support an asserted right to genetic engineering, I draw on empirical research in behavioral psychology to examine the influence of eugenic norms on egalitarian attitudes and institutions. I predict that if parents become accustomed to choosing the genes of their children, it would be radically more difficult to give an influential account for why the successful should adopt a charitable posture toward those who are less fortunate. I argue that by shifting control over offspring DNA from chance to choice, enhancement will inflate a sense of individual entitlement for social and economic outcomes. I conclude that increasing willingness to prevent the birth of abnormal children distracts attention from institutions that fail to accommodate the limitations of imperfect people. Some may reply that producing people who better fit the roles society chooses to reward need not deter us from providing for people whose abilities fail to meet the demands of modern society. However, this reply misses the way that changes in reproductive practices can bring about changes in the way that we understand our identities and relationships. Eugenic solutions to social problems such as poverty, crime, and unemployment reshape the challenge of genetic disadvantage so that it is no longer one we address through collective measures such as public education, social services, and income redistribution, and instead becomes one for individual parents to prevent through donor screening, embryo discard, or selective abortion. (shrink)

Mitochondrial replacement therapy is a process whereby a child is created by combining the nuclear DNA of two people wishing to have a child with mitochondrial DNA donated by a third person. It poses a new question as to the extent of a person’s right to know the identity of those from whom their DNA is inherited. In commentary upon Turkmendag’s paper, I evaluate the consistency of UK regulation of this issue with the European Convention of Human Rights. Under (...) UK law, a person created using donated mtDNA is only entitled to information about the procedure which does not identify the donor. I argue that this approach is consistent with the previous European Court of Human Rights and UK judicial decisions on the rights of individuals to information about their identity and ancestry and with the deeper foundational principle which Kai Möller argues the Convention protects existential self-understanding. I conclude that, as mtDNA has not been proven to affect an individual’s life choices and outward characteristics to the extent that gamete donation does, it is acceptable to prioritize the interests that anonymous donation protects over the desire of the recipient to know the identity of their donor. (shrink)

OPEN ACCESS -/- Each year, tens of thousands of children are conceived with donated gametes (sperm or eggs). By some estimates, there are over one million donor-conceived people in the United States and, of course, many more the world over. Some know they are donor-conceived. Some do not. Some know the identity of their donors. Others never will. -/- Questions about what donor-conceived people should know about their genetic progenitors are hugely significant for literally millions of (...) people, including donor-conceived people, their parents, and donors. But the practice of gamete donation also provides a vivid occasion for thinking about questions that matter to everyone. What is the value of knowing who your genetic progenitors are? How are our identities bound up with knowing where we come from? What obligations do parents have to their children? And what makes someone a parent in the first place? -/- In Conceiving People: Identity, Genetics and Gamete Donation, Daniel Groll argues that people who plan to create a child with donated gametes should choose a donor whose identity will be made available to the resulting child. This is not, Groll argues, because having genetic knowledge is fundamentally important. Rather, it is because donor-conceived people are likely to develop a significant interest in having genetic knowledge and parents must help satisfy their children's significant interests. In other words, because a donor-conceived person is likely to care about having genetic knowledge, their parents should care too. (shrink)

Currently in the United Kingdom, anyone donating gametes has the status of an open-identity donor. This means that, at the age of 18, persons conceived with gametes donated since April 1, 2005 have a right to access certain pieces of identifying information about their donor. However, in early 2015, the UK Parliament approved new regulations that make mitochondrial donors anonymous. Both mitochondrial donation and gamete donation are similar in the basic sense that they involve the contribution of (...) gamete materials to create future persons. Given this similarity, this paper presumes that both types of donor should be treated the same and made open-identity under the law, unless there is a convincing argument for treating them differently. I argue that none of the existing arguments that have been made so far in favor of mitochondrial donor anonymity are convincing and mitochondrial donors should therefore be treated as open-identity donors under UK law. (shrink)

The benefits of family planning for those who desire it, and the possibilities of coercion against those who do not, are well-known aspects of international population policies. Family planning technologies, more than simply a means for preventing conception, are involved as identity artefacts in the construction of bodies and in the reproduction of power relations. As such, modern contraceptives, organized by and implemented through, donor-funded programmes constitute a discursive apparatus through which scattered hegemonies are disseminated. Women's use of (...) family planning, traditional and modern, allows them to counter the expectations of these hegemonies at some times, and to embody them at others. Both service providers and clients, construct identities, referenced through women's bodies, using the discourses of international population control and family planning. This paper uses data collected in Tanzania to understand how notions of modernity in the family planning programme construct Tanzanian female bodies as ‘traditional’ and ‘modern’, how these discursive inequalities reflect and compound material disparities and how these logics come into play in the ways that women construct themselves and each other. (shrink)

Arguments against directed altruistic living organ donation are too weak to justify a ban. Potential donors who want to specify the non-related person or group of persons to receive their donated kidney should be accepted. The arguments against, based on considerations of motivation, fairness and (non-)anonymity (e.g. those recently cited by an advisory report of the Dutch Health Council), are presented and discussed, as well as the Dutch Governments response. Whereas the Government argues that individuals have authority with regard to (...) the allocation of their organs, partial considerations have not been sufficiently explored. In addition, it is argued that partial relationships govern human life, are significant and should be valued highly. These relationships are at the core of accepted living kidney donation between relatives (family members, partners, friends). Respecting the particular act of living donation goes beyond respect for autonomy; it touches upon our personal and social identity. Donation, e.g. of a kidney, is not undertaken strictly for the benefit of the recipient, but also to meet the moral standards we wish to set for ourselves. This consideration, rooted in a view of moral identity, provides the basis for many forms of directed donation that are both partial and justified. If the importance of this is not recognized, social policies can be neither adequate nor effective. (shrink)

Abstract:This essay reviews the 2013 Human Life International (HLI) propaganda video, Central America and Mexico: Fighting for Life, Faith, and Family, which, we argue, illustrates the well-orchestrated counteroffensive against reproductive and sexual rights movements occurring in the region. First we summarize the film's key themes, including the assertion that Catholicism is fundamental to Mexican and Central American identities and that the international “pro-abortion movement” is waging war against Catholics. Second, we note the development of a new strategic alliance between Catholics (...) and evangelicals that relies on lay religious activists working in the fields of medicine, bioethics, law, and government. Third, we show how the video appeals to HLI donors by asking them to support crisis pregnancy centres, homes for unwed mothers, adoption programs, and “natural” fertility assistance. We argue that the film conspicuously ignores the consequences of abortion bans already in place in Nicaragua, El Salvador, and Honduras, and does not consider that what it terms “international pressures” also includes treaty obligations with the United Nations and Organization of American States. This essay offers insights into the strategies used by opponents of reproductive and sexual rights movements in Mexico and Central America. (shrink)

This article focuses on the experiences of becoming and being mothers for lesbian co-parents who have children via donor insemination. Rather than the presence of children incorporating lesbians into the mainstream as “honorary heterosexuals,” the author argues that lesbian parenting represents a radical and radicalizing challenge to heterosexual norms that govern parenting roles and identities. It undermines traditional notions of the family and the heterosexual monopoly of reproduction. The same-sex context together with successful collaboration with donors supports the refashioning (...) of kinship relationships. An attentiveness to the gender dynamics of sexuality illuminates further contestations. The author argues that their structural similarities as women place them in contradiction with dominant gender practices enacted in heterosexual relationships. This facilitates the evaluation and negotiation of more egalitarian approaches to work and parenting, and through their operationalization, much of the logic supporting conventional divisions of labor is undermined. (shrink)

More and more areas of medicine involve subjects donating tissues to another — blood, organs, bone marrow, sperm, ova and embryos can all be transferred from one person to another. Within the technical frameworks of biomedicine, such fragments are generally treated as detachable things, severed from social identity once they are removed from a particular body. However an abundant anthropological and sociological literature has found that, for donors and patients, human tissues are not impersonal. They retain some of the (...) values of personhood and identity, and their incorporation often has complex effects on embodied identity. This article draws on feminist philosophy of the body to think through the implications of some of these practices. Specifically, it draws on the idea of intercorporeality, wherein the body image is always the effect of embodied social relations. While this approach is highly productive for considering the stakes involved in tissue transfer, it is argued that the concept of body image has been too preoccupied with the register of the visual at the expense of introceptive data and health/illness events. Empirical data around organ transplant and sperm donation are used to demonstrate that the transfer of biological fragments involves a profound kind of intercorporeality, producing identifications and disidentifications between donors and recipients that play out simultaneously at the immunological, psychic and social levels. (shrink)

This article refers to selected issues elaborated from my interdisciplinary doctoral thesis accomplished at the University of South Africa in 2019. I investigated the ethical-theoretical frameworks as well as practices of Christian humanitarian non-governmental organisations in Germany by combining a theoretical part and an empirical part. The empirical part was accomplished by interviewing 11 NGOs from the humanitarian field. The findings of theory and practice showed that many Christian NGOs typically conform to the secular mindset and regulations in order to (...) be able to function as organisations. The results also revealed that Christian NGOs have difficulties in defining their identity in order to be attractive and convincing to their current and prospective employees and donors. In addition, organisational and hierarchical structures are mostly taken from business companies but do not necessarily always fit to the individual organisations. The research is significant because it shows to what extent these NGOs experience tensions and insecurities having to work in a secular environment, and it helps to identify some typical challenges that Christian organisations face in Western countries. The purpose of the thesis was to impact on the reflection and practice of leaders of NGOs in their quest to understand developments and paradigm shifts, and ensure that they will act in a recognisably Christian way.Contribution: This article has been held as a presentation at the Leadership Conference in Pretoria, South Africa, in 2019. It contributes to the research of specific Christian leadership, and particularly of leadership in Christian non-governmental organisations. This article aims to describe the challenges these organisations face, having to work in the midst of a secular environment. (shrink)

This paper examines the ethical aspects of organ transplant surgery in which a donor heart is transplanted from a first recipient, following determination of death by neurologic criteria, to a second recipient. Retransplantation in this sense differs from that in which one recipient undergoes repeat heart transplantation of a newly donated organ, and is thus referred to here as “reuse cardiac organ transplantation.” Medical, legal, and ethical analysis, with a main focus on ethical analysis. From the medical perspective, it (...) is critical to ensure the quality and safety of reused organs, but we lack sufficient empirical data pertaining to medical risk. From the legal perspective, a comparative examination of laws in the United States and Japan affirms no illegality, but legal scholars disagree on the appropriate analysis of the issues, including whether or not property rights apply to transplanted organs. Ethical arguments supporting the reuse of organs include the analogous nature of donation to gifts, the value of donations as inheritance property, and the public property theory as it pertains to organs. Meanwhile, ethical arguments such as those that address organ recycling and identity issues challenge organ reuse. We conclude that organ reuse is not only ethically permissible, but even ethically desirable. Furthermore, we suggest changes to be implemented in the informed consent process prior to organ transplantation. The organ transplant community worldwide should engage in wider and deeper discussions, in hopes that such efforts will lead to the timely preparation of guidelines to implement reuse cardiac organ transplantation as well as reuse transplantation of other organs such as kidney and liver. (shrink)