To explore how cultural beliefs are reflected in different popular views of pre-implantation genetic diagnosis for human leukocyte antigen match (popularly known as “savior siblings”), we compare the reception and interpretations, in Germany and Israel, of the novel/film My Sister’s Keeper. Qualitative analysis of reviews, commentaries and posts is used to classify and compare normative assessments of PGD for HLA and how they reproduce, negotiate or oppose the national policy and its underlying cultural and ethical premises. Four major themes (...) emanated from the comparison: loss of self-determination and autonomy; loss of dignity through instrumentalization; eugenics and euthanasia; and saving life. In both countries, most commentaries represented a dominant position, with a few negotiated positions. We also highlight the decoding of a relatively less explored bioethical aspect of My Sister’s Keeper’s narrative, namely the meaning of euthanasia. We conclude by discussing how the findings relate to attempts of providing cultural explanations for the regulation of HLA-PGD. (shrink)

In relation to the phenomenon of moral distress, this article presents two original perspectives. First, the literature to date reflects a focus on moral distress in an occupational context. In this article, however, the impact of moral distress on siblings is explored. Moral distress is considered in a particular context, stem cell donation, but there are clear insights and implications for wider practice, particularly in life-threatening contexts and situations where live donation enhances the potential for survival. Second, the article (...) represents some progress in relation to creating conceptual clarity. It is suggested that in addition to external and internal moral constraints a further classification of constraint emerges, and that this is useful in teasing out the distinction between moral stress and moral distress. The insights drawn from exploring the experiences of these siblings should enhance the ability to pre-empt and ameliorate potential distress and, ultimately, reduce harm. (shrink)

Definition of the problem The creation and selection of children as tissue donors is ethically controversial. Critics often appeal to Kant’s Formula of Humanity, i.e. the requirement that people be treated not merely as means but as ends in themselves. As many defenders of the procedure point out, these appeals usually do not explain the sense of the requirement and hence remain obscure. Arguments This article proposes an interpretation of Kant’s principle, and it proposes that two different instrumental stances be (...) distinguished. I argue that the creation of “saviour children” is a form of instrumentalization that I dub “preemptive instrumentalization” and that it is categorically different from earlier forms of instrumental attitudes concerning human reproduction. Conclusion Critics are wrong to claim that Kant’s principle is either compatible with the selection of saviour siblings or too vague to serve as an ethical principle. (shrink)

One of the more controversial uses of preimplantation genetic diagnosis (PGD) involves selecting embryos with a specific tissue type so that the child to be born can act as a donor to an existing sibling who requires a haematopoietic stem cell transplant. PGD with HLA tissue typing is used to select embryos that are free of a familial genetic disease and that are also a tissue match for an existing sibling who requires a transplant. Preimplantation HLA tissue typing occurs (...) when parents select embryos that are not at risk of a familial genetic disease to be a match for an existing sibling who requires a transplant. In Victoria, Australia, applications to use PGD with HLA tissue typing are reviewed by the Infertility Treatment Authority on a case by case basis. Preimplantation HLA tissue typing is prohibited prima facie because the embryo to be tested would not be at risk for a genetic abnormality or disease. Arguments for or against the use of PGD/HLA tissue typing are based on several key issues including the commodification and welfare of the donor child. This essay aims to show that that the same arguments apply to both PGD with HLA tissue typing and Preimplantation HLA tissue typing, and that the policy distinction between the two procedures is therefore ethically inconsistent. (shrink)

With a view to addressing the moral concerns about the use of donor siblings, the Policy Statement of the American Academy of Pediatrics - Children as Hematopoietic Stem Cell Donors (the Policy) has laid out the criteria upon which tissue harvest from a minor would be permissible.

The conception of saviour siblings using preimplantation genetic diagnosis coupled with human leukocyte antigen typing or HLA typing alone is controversial and receives a wide divergence of legal responses among countries around the world. The resulting child conceived through this procedure is dubbed a ‘saviour sibling’ as the child can potentially act as a compatible donor for an elder ailing sibling who needs a haematopoietic stem cell transplantation. At present, the acceptability of this procedure in Malaysia is ambiguous (...) as there is no specific statute governing assisted reproductive technology, and the guideline issued by the Malaysian Medical Council does not expressly address this issue. The ethical arguments relating to the conception of saviour siblings in the current literature are mainly thought to reflect a liberal viewpoint which is predominantly Western in nature. This paper seeks to explore the perception of selected key stakeholders on the acceptability of and ethical concerns related to this procedure in the Malaysian context. The findings indicate that stakeholders generally support the conception of saviour siblings and some of their concerns echo the Western viewpoint. Interestingly, many were highly anxious about its economic implication, which is rarely discussed in the current literature on saviour siblings. (shrink)

The advancement of human reproductive technology has made it possible for parents with a child affected by a haematological disorder to select and bring into being, a prospective child who can act as a matched stem cell donor. This can be done through the use of preimplantation genetic diagnosis (PGD) coupled with human leukocyte antigen (HLA) typing (PGD-HLA typing), or HLA tying as a standalone procedure, where a healthy embryo, which is an HLA match to the existing sick sibling, (...) is chosen for implantation. The creation of such a sibling (saviour sibling) is normally taken as a last resort when there is no related or unrelated matched donor. While the conception of a saviour sibling may serve as a reliable and realistic treatment option for the ailing child, it also poses new moral questions that challenge a religiously pluralistic society such as Malaysia. The use of PGD-HLA typing may be controversial as it involves creating a life to save a life, selection of compatible human embryos and destruction of the unselected embryos. At present, there is no legal framework regulating the conception of saviour siblings. The development of ethically sound and appropriate local laws and policies should consider the views of religious communities, especially when it involves a controversial subject such as the conception of saviour siblings. This article seeks to explore the perceptions of religious scholars and representatives of the major religions professed and practised in Malaysia, namely Islam, Buddhism, Christianity and Hinduism, through qualitative interviews. (shrink)

Despite the much-discussed court cases in the 1970s that permitted some sibling-to-sibling kidney donations from minors,1 principles that can guide parental, medical, or judicial decisionmaking are neither clearly articulated nor uncontroversial.

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that the parents (...) will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that the parents (...) will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

Seventeen-year-old David is a perfect organ match for his younger brother, Ken, who has kidney failure. David understands that the procedure presents some risk for him and that after surgery he may no longer be able to continue playing football. His idols all have been football players and he now plays on his high school's team. Nevertheless, he wants to donate a kidney to his brother and agrees to being a donor as soon as the option is mentioned. He (...) never displays any ambivalence and says, I want to donate my kidney because then I'll be a hero to my family. This close family - of two parents and five older siblings — strongly supports the seventeen-year-old's decision, especially after an older brother, who was also a perfect organ match, is found medically (anatomically) unsuitable.The parents and two of the older siblings could still be medically acceptable donors: their organs are likely to be better grafts (one haplotype matches) than a non-related cadaveric kidney would be, but less compatible than the perfect organ match (haploidentical) that could be provided by David, the adolescent brother. Studies have shown that in the short run there is little difference in the survivability of organs from different classes of donors. After several years, however, there is a significant difference with perfectly matched kidneys being much less prone to rejection than the less ideally matched organs (1, p. 118). (shrink)

Since 1991, sperm donors in the UK have had the legal right to withdraw consent for the use of their sperm in fertility treatment. This has the potential to adversely affect patients. It may mean that previous recipients of a donor’s sperm cannot have further children who are full biological siblings to an existing child, and that embryos created from the donor’s sperm and a patient’s eggs must be destroyed.

Successful preimplantation genetic diagnosis (PGD) to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization (IVF) to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that (...) the parents will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing” (rather than to avoid a sex-linked disorder), PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

Existing empirical research often do not explain which concepts about genetics underlie the assumption that genetic information is deemed important for donor-conceived offspring. This study focused on how donor-conceived individuals following anonymous sperm donation give meaning to and make sense of genes and genetics. Analysis is based on focus groups and interviews with adult donor-conceived offspring. Findings suggest that genes are part of their specific context of being donor-conceived but also play a role in daily life. (...) Genes make sense on an individual level and a relational level, both on parent-child as sibling-level. On an individual level they were perceived as (1) a biological starting package, (2) their own unique combination and (3) as a reference point. On a relational level, genes were seen as (1) “person-al”, (2) connecting and (3) locating individuals. This information is essential for those supporting/counseling donor conceived offspring and families as well as for policy-members. (shrink)

In 1999, the Bangladesh government introduced the Human Organ Transplantation Act allowing organ transplants from both brain-dead and living-related donors. This Act approved organ donation within family networks, which included immediate family members such as parents, adult children, siblings, uncles, aunts, and spouses. Subsequently, in January 2018, the government amended the 1999 Act to include certain distant relatives, such as grandparents, grandchildren, and first cousins, in the donor lists, addressing the scarcity of donors. Nobody, without these relatives, is (...) legally permitted to donate organs for transplantation in Bangladesh. The focus of this study was to investigate who should donate organs for transplantation in Bangladesh. The ethnographic fieldwork revealed that potential donors are not always available to immediate family members, and even when they are, they might be medically unsuitable for transplants. These considerations influenced the government in the revision of the Act. Secondly, the findings of the study suggest maintaining the current family-based regulations for living organ donation in Bangladesh. Furthermore, the study highlighted a potential consequence: amending the regulation to permit donations to unrelated recipients could significantly amplify the issue of organ selling and buying. While Islam advises Muslims to be compassionate towards all humankind, it also encourages Muslims to prioritize saving the lives of family members. This religious belief limits Muslims from donating organs to family members. (shrink)

Since the mid-2000s, a number of Western countries have witnessed an increase in the number of children born into ‘alternative’ or ‘queer’ families. Parallel with this queer baby boom, online media technologies have become intertwined with most people’s intimate lives. While these two phenomena have appeared simultaneously, their integration has seldom been explored. In an attempt to fill this gap, the present article explores the ways in which contemporary queer reproduction is interwoven with online media practices. Importantly, the article does (...) not understand online media as a technology that simply facilitates queer kinship; rather, it argues that online media technology is a reproductive technology in its own right. Drawing on empirical examples of media practices of kinning, such as online shopping for donor sperm and locating ‘donor siblings’ via online fora such as Facebook, the article analyses the merging and intersection of online media and queer kinship. These analyses serve as a foundation for an exploration of contemporary kinship and the development of a new theoretical framework for contemporary queer reproduction. Empirically, the examples are from single women’s (i.e. solo mothers) and lesbian couples’ family making. Using Weston's work on ‘chosen families’ as a backdrop for discussion, the article describes families of choice in light of new online kinship connections. In particular, the article focuses on online-initiated connections between donor siblings and how such connections can re-inscribe biology as important to queer kinship. Furthermore, it closely examines how media technology guides queer reproduction in particular directions and how technology causes becoming as a family. (shrink)

Preimplantation genetic diagnosis is a technique which was originally developed as an alternative to prenatal diagnosis for couples at high risk of transmitting a genetic defect. It allows scientists to check specific genetic defects of the embryo obtained through in vitro fertilization so that only embryos not affected by the tested disease or balanced for the tested chromosomes can be replaced. Recently, case reports reveal that clinicians applying PGD are increasingly confronted with requests by parents with an affected child whishing (...) for PGD not only to test IVF-created embryos for genetic disease but also to test for a nondisease trial related to immune compatibility with a child in the family in need of a hematopoietic stem cell transplant. Only embryos HLA matched with an existing sibling in need of a compatible donor of haematopoietic stem cells would be transferred. In this article, our main objective is not to answer the question of the ethical permissibility of this technique. We rather want to clarify some anthropological options underpinning this technique, which have to be taken into account for an ethical evaluation. By virtue of its very being, the human person is multidimensional: open to itself, to another and to society. This multidimensional character of the human person is a real challenge in the field of human genetics and medically assisted reproduction: a couple never decides solely for itself, but its decision has an enormous impact on their offspring; the physician is a necessary third person in the decision making process; a parental decision is influenced by and ma y change the public support of PGD. First we have to evaluate the request of the couple to use PGD in order to create a donor sibling. The main ethical argument against this kind of request is the instrumentalization of the future child. The child becomes an instrument to cure another child. One of the fundamental rules underlying Western moral thinking is the Kantian imperative. The second formulation of the categorical imperative goes as follows: ‘Act in such a way that you always treat humanity, whether in your own person or the person of any other, never simply as a means, but always at the same time as an end’. From this perspective we advance the ethical requirement to surpass the apparent discrepancy between the need of the parents to produce a healthy child and the desire of parents to have a child. Second, the physician should take into account the fact that a technological innovation may have such a compelling character that human reproductive freedom will be restricted rather than enlarged. Thus the physician should be guarded from engaging in so-called medical futile acts. Third, the experience of the donor child will be discussed. It could be argued that a heavy burden is placed on the donor child. The transplantation may fail and this may give the child a fundamental sense of unworthiness and deficiency and a feeling of not being able to live up to the expectations. The psychological impact of stem cell donation among siblings should indeed not be underestimated. Finally, on societal level, the need for instant success has contributed to ever more invasive reproductive technologies. We question however that reproductive success does not necessarily depends on the invasiveness of the techniques. Parents should be given time to put meaning on their lack of reproductive omnipotence. (shrink)

Living donor kidney transplantation has increased significantly in the past 10 years. Currently it accounts for 41% of all kidney transplants in the USA.1 While the percentage is lower in the United Kingdom and other European countries, the number of living compared with cadaveric kidney donors will probably continue to increase globally. Mortality associated with surgery on live donors is low, thanks largely to the success of laparoscopic nephrectomy. Kidney transplantation from a living donor is preferable to that (...) from a cadaveric, or deceased, donor because of its superior graft and patient survival outcomes. It also preempts the need for or reduces the duration of dialysis for individuals with end-stage renal disease and therefore greatly improves their quality of life.Some who donate kidneys to anonymous recipients are motivated by altruism, with no direct benefit and only an indirect psychological benefit as a consequence of donating. Those who donate may be motivated by prudential reasons involving shared interests, or by a sense of obligation grounded in emotional relations. This includes donations between spouses, siblings, parents and children and may also include donations between intimate friends. Others may be motivated to donate by the prospect of financial gain. In a recent article on kidney markets, The Economist claimed that those who donate one of their healthy kidneys do so at “very little risk to their health”.2 Presumably, this provides support for these markets. In 2004, Zell Kravinsky, an American in his early 40s, gave away one of his healthy kidneys to a stranger as part of a utilitarian obligation to help other people and maximise the good by saving or improving the quality of their lives.3 He estimated that this entailed a statistically insignificant risk to his health. In a lecture to an ethics class at …. (shrink)

Research on embryo donation and receipt continues to grow, highlighting how specific national contexts shape views and experiences. The present article reports on a qualitative study on embryo donation and receipt in Australia. Interviews were conducted with 15 participants: embryo donors and those seeking to donate (6), embryo recipients and those seeking donors (3), people with embryos in storage or previously in storage (5), and egg donors where resulting embryos were donated to a third party (1). A deductive thematic analysis (...) identified four key themes: understandings of embryos as cells, potential children, and/or children; a focus on relationships between “siblings”; importance of language and “family words” in discussing relationships; and extended family members having difficulty understanding the concept of embryo donation. The article concludes with a consideration of the implications of the findings in terms of the practice of embryo donation and the policies that surround it. (shrink)

Living related organ transplantation is morally problematic for two reasons. First, it requires surgeons to perform nontherapeutic, even dangerous procedures on healthy donors—and in the case of children, without their consent. Second, the transplant donor and recipient are often intimately related to each other, as parent and child, or as siblings. These relationships challenge our conventional models of medical decisionmaking. Is there anything morally problematic about a parent allowing the interests of one child to be risked for the (...) sake of another? What exactly are the interests of the prospective child donor whose sibling will die without an organ? Is the choice of a parent to take risks for the sake of her child truly free, or is the specter of coercion necessarily raised? (shrink)

The routinization of prenatal diagnosis is the source of bioethical and policy debates regarding choice, autonomy, access, and protection. To understand these debates in the context of cultural diversity and moral pluralism, we compare Israel and Germany, focusing on two recent repro-genetic “hot spots” of such policy-making at the beginning of life: pre-implantation genetic diagnosis and non-invasive prenatal genetic testing, two cutting-edge repro-genetic technologies that are regulated and viewed very differently in Germany and Israel, reflecting different medicolegal policies as well (...) as public and bioethical considerations. First, we compare policy-making in the context of PGD for HLA typing, used to create sibling donors, approved in Israel under specific conditions while prohibited in Germany. Second, we compare policy-making in the context of NIPT, which came under fire in Germany, while in Israel there has been little public debate about it. Both countries justify their contrasting policies as reflecting a concern for the well-being and care of the embryo/child, thus highlighting different concepts of embryo/child protection, autonomy, family relations, and the impact of religion and history on the promotion/protection of life. We use the juxtaposition of PGD and NIPT to highlight some inconsistencies in policies concerning the protection of extra- and intra-corporeal embryos. We conclude by drawing on the comparison to show how national variations exist alongside co-evolution. (shrink)

Next SectionPreimplantation tissue typing has been proposed as a method for creating a tissue matched child that can serve as a haematopoietic stem cell donor to save its sick sibling in need of a stem cell transplant. Despite recent promising results, many people have expressed their disapproval of this method. This paper addresses the main concerns of these critics: the risk of preimplantation genetic diagnosis (PGD) for the child to be born; the intention to have a donor child; (...) the limits that should be placed on what may be done to the donor child, and whether the intended recipient can be someone other than a sibling. The author will show that these concerns do not constitute a sufficient ground to forbid people to use this technique to save not only a sibling, but also any other loved one’s life. Finally, the author briefly deals with two alternative scenarios: the creation of a human leukocyte antigen (HLA) matched child as an insurance policy, and the banking of HLA matched embryos. (shrink)

The UK Human Fertilisation and Embryology Authority was right to permit tissue typing preimplantation genetic diagnosisOn July 21 2004, the Human Fertilisation and Embryology Authority , Britain’s regulatory agency for reproductive technologies, revised its policy on preimplantation genetic diagnosis for tissue typing.1,2 The authority of the HFEA to enact such a policy was affirmed by the UK’s highest court, the House of Lords, on April 28 2005.3 Preimplantation genetic diagnosis combines in vitro fertilisation with genetic testing. In PGD, embryos generally (...) undergo biopsy prior to the eight cell stage, followed by genetic testing for a particular trait. Tissue typing PGD is done to identify an embryo that is tissue matched for a child suffering from a severe disease requiring bone marrow or cord blood stem cell transplantation and for whom no living donor exists. This procedure was first performed in 2000.4 Precise matching of tissue types is critical to successful tissue transplant, and the donors of such tissues are often referred to as “saviour siblings”.Where a tissue matched individual already exists, extracting bone marrow from that individual or collecting cord blood already in storage, rather than creating a match, presents the most immediate treatment alternative. Bone marrow donation from adults or other medically competent individuals is not generally ethically contested, and bone marrow donation from medically incompetent individuals is also permissible under certain conditions.5 Where no living tissue donor exists, however, intentionally creating a donor through tissue typing PGD is among a short list of possible treatment options.The July HFEA policy change makes PGD licensable in cases where tissue typing is the only purpose of testing. Previously, PGD was licensable in the UK only for disease testing, and tissue typing PGD was permissible only when …. (shrink)

Parents are usually appreciated as possessing legitimate moral authority to compel children to make at least modest sacrifices in the service of widely shared values of moral decency. This essay argues that such authority justifies allowing parents to authorize a child to serve as an organ or tissue donor in certain circumstances, such as to authorize bone marrow donations to save a sibling with whom the potential donor shares a deep emotional bond. The approach explored here suggests, however, (...) that at least under some conditions, parents have legitimate authority to authorize donations forbidden by current guidelines. (shrink)

Preimplantation genetic diagnosis—the risks are unknown and human dignity could be compromisedMerle Spriggs argues that there are no good reasons to prevent a couple utilising preimplantation genetic diagnosis when the sole aim of the procedure is that the resultant child is a compatible umbilical cord blood donor for a sick sibling.1 I agree with much of the argument to support this, however, I believe Spriggs has omitted one important point and underplayed another.The risk of PGD to the child born (...) as a result of this process has not been fully studied. Therefore the parents are exposing the child to potential …. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Receiving the Gift of Life: My Kidney Transplant StoryJudith W. RyanAs one of three siblings who all inherited an unfortunate gene from our mother, I was born with polycystic kidney disease (PKD). None of us knew of this, however, until later middle age, and my mother not until she was 76. I was the last sibling diagnosed at the age of 56. My brothers had been diagnosed some (...) years before and jokingly started to look at me as a universal donor. Since I had a 50-50 chance of having PKD and with a mother who was one of eight children with none of her siblings known to have the disease, I had not felt an urgency to be tested. Besides, I had no signs or symptoms. But now there was a reason. I made an appointment for a renal ultrasound and while having the procedure, I tipped the screen so that I could see the results. Although the technician was not happy with this, I was repaid with the view of my kidneys looking full of bubbles. Yes, our family was three for three in the genetic game of roulette.I knew immediately how I was going to navigate this health issue. As an adult nurse practitioner I had a very good understanding of what was to come. I knew my blood type “O” was the most common and would mean the longest wait for a deceased donor transplant, at least five years if I were lucky and only after enduring several years of progressing renal failure. In addition, I had cared for dialysis patients and watched my mother endure with difficulty both peritoneal and hemodialysis prior to her death a year before my diagnosis. Knowing I would not choose dialysis left me hoping for a miracle of a living donor or, more realistically, managing my disease as best I could until I died.The next step was managing PKD symptoms and issues as my kidneys continued to fail. One of the errors in my thinking during this time turned out to be that because I had two brothers who had the same disease and were ahead of me in their disease progression, I could follow their lead. It turned out that we manifested our disease very differently. My younger brother, who was diagnosed first, had to deal with significant pain from persistent cyst ruptures, monthly, biweekly then weekly. This continued even after his transplant until he had his native kidneys removed. The other two of us did not have to deal with cyst ruptures. Additionally, anemia was no problem for my younger brother but was for us older siblings. Significant fatigue and weariness were a problem for both of my brothers but not for me.And so it went, as we compared our blood test results, that the idea of a living donor entered the conversation. I knew this would be a problem for me because how do you ask people to consider being a donor? I had difficulty asking friends for a ride to the airport. This is where the grace and kindness of others and divine intervention enter [End Page 107] our story—word about our medical dilemma spread through the visibility of my younger brother, a minister in New England.Fortunately for me, my much beloved younger brother had dozens of people who wanted to be his donor. About 12 of these potential donors were actually tested before finding a match. One of his unmatched donors became the donor for my older brother (our first family transplant). Two years later, my other brother received his transplant. Three years later, after being told he was not a good match for my brother, this dear man came forward to be a possible donor for me. Hence, I got my transplant from an unused donor from my younger brother’s group. Overall, we had living donors from three different churches located within an hour of each other in New England. I even lucked out and acquired the minister of one of the churches as my donor. All three of us received kidneys over five years from living donors who did not know my older brother... (shrink)

Hematopoietic stem cell transplantation is a widely accepted practice in the United Kingdom (UK). The relatively liberal UK law permits donation both within families and from strangers, and even allows the creation of “saviour siblings” who are brought into being with the specific intent of having them donate stem cells to save other members of their family. This chapter describes the regulation of HSCT in the UK and highlights some ethical issues related to discrimination against some categories of potential (...) donors, the accuracy of the information provided to potential donors, and the controversy concerning saviour siblings. (shrink)

Recuperating the sibling -- Sibling logic -- Fraternity and revolution -- The shadows of fraternity -- Economizing desire : the sibling (in) law -- Genealogical sciences -- Living languages : comparative philology and evolution -- The east comes home : race and religion.

We show that if a countable structure M in a finite relational language is not cellular, then there is an age-preserving $N \supseteq M$ such that $2^{\aleph _0}$ many structures are bi-embeddable with N. The proof proceeds by a case division based on mutual algebraicity.

Spurred by a severe shortage of cadaveric organs, there has been a marked growth in living organ donation over the past several years. This has stimulated renewed interest in the ethics of this practice. The major concern has always been the possibility that a physician may seriously harm one person while trying to improve the well-being of another. As Carl Elliott points out, this puts the donor's physician in a difficult predicament: when evaluating a person who volunteers to donate (...) an organ, “a doctor is in the position of deciding not simply whether a subject's choice is reasonable … but whether he [the doctor] is morally justified in helping the subject accomplish it.”1 This question has become even more difficult since the introduction of living donor operations that are more risky than living kidney donation and the suggestion that volunteers at added risk may sometimes be acceptable.2 So, how can we decide when the risk is too much? (shrink)

Recent research finds that people respond more generously to individual victims described in detail than to equivalent statistical victims described in general terms. We propose that this “identified victim effect” is one manifestation of a more general phenomenon: a positive influence of tangible information on generosity. In three experiments, we find evidence for an “identified intervention effect”; providing tangible details about a charity’s interventions significantly increases donations to that charity. Although previous work described sympathy as the primary mediator between tangible (...) information and giving, current mediational analyses show that the influence of tangible details can operate through donors’ perception that their contribution will have impact. Taken together with past work, the results suggest that tangible information of many types promotes generosity and can do so either via sympathy or via perceived impact. The ability of tangible information to increase impact points to new ways for charities to encourage generosity. (shrink)

Deciding whether to grant an expanded access request for a child whose sibling is enrolled in a gene therapy trial involves a number of complex factors: considering the best interests of the child, the psychosocial and economic impact on the family, and the concerns and obligations of researchers. Despite the challenges in coming to a substantively fair outcome in cases of discordant eligibility, creating a procedurally fair decision-making process to adjudicate requests is essential.

Assisted reproduction often involves biological contributions by third parties such as egg/sperm donors, mitochondrial DNA donors, and surrogate mothers. However, these arrangements are also characterised by a biological relationship between the child and at least one intending parent. For example, one or both intending parents might use their own eggs/sperm in surrogacy, or an intending mother might conceive using donor sperm or gestate a donor embryo. What happens when this relationship is absent, as in the case of 'double‐ (...) class='Hi'>donor surrogacy' arrangements (DDS)? Here, a child is conceived using both donor eggs and sperm, carried by a surrogate, and raised by the commissioning parents. In this paper, I critically examine proposals to allow DDS in the United Kingdom, and the intentionalist justification for treating this practice distinctly (morally and legally speaking) from private adoption. I argue that the intentionalist approach cannot plausibly justify such a distinction and that other approaches to moral parenthood are also unlikely to succeed. (shrink)

In Victoria, Australia, some parents are now able to select embryos free from genetic disease which will provide stem cells to treat an existing siblingA n Australian couple from Victoria have been given permission to use in vitro fertilisation technology to screen an embryo in order to “create a `perfect match’ sibling” for their seriously ill child. In vitro fertilisation is regulated in Victoria by the Infertility Treatment Authority which restricts access to people who are medically infertile or who have (...) a family history of genetic disease. The approval given to the Victorian couple is for a new application of IVF consisting of preimplantation genetic diagnosis together with tissue typing.The couple’s three year old daughter Christina has Fanconi’s anaemia, a rare genetic condition, that means she will die before she turns 15 unless she receives blood from the umbilical cord of a “perfect match” sibling. Some people are saying this use of IVF amounts to the creation of a genetically engineered “designer” baby. 1–6Preimplantation genetic diagnosis is an IVF technique …. (shrink)

Birth order has been examined over a wide variety of dimensions in the context of modern populations. A consistent message has been that it is better to be born first. The analysis of birth order in this paper is different in several ways from other investigations into birth order effects. First, we examine the effect of birth order in an egalitarian, small-scale, kin-based society, which has not been done before. Second, we use a different outcome measure, fertility, rather than outcome (...) measures of social, psychological, or economic success. We find, third, that being born late in an egalitarian, technologically simple society rather than being born early has a positive outcome on fertility, and fourth, that number of older siblings and sibling set size are even stronger predictors of fertility, especially for males. (shrink)

Although the family is the safest environment for each member, sometimes violence and abuse can come from the family members. Violence causes family relationships to deteriorate as in all other relationships among people. Sibling violence, as a form of domestic violence, can sometimes have dire consequences that can result in family breakup, death or long-term loss of one of the siblings. In this study, sibling violence, which has the potential to harm family relations in such a way, will be (...) discussed in the context of two stories in the Qurʾān. It is aimed to contribute to other disciplines that study on this subject by examining the attitude of Islam against this violence, which affects the family, and the solutions of the Qur’ān to sibling violence. These stories in the Qur’ān are the story of Prophet Adam’s two sons who narrate an incident of violence that result in the brother killing his brother, and the story of Prophet Joseph and his brothers who narrate the sibling violence resulting in long-term loss. Both stories provide clues to the prevention of violence in the light of the causes of sibling violence and the behavior of the victim sibling in the development of events. In addition, because of the fact that these stories have taken place in the family of the prophets, they give people the message that sibling violence can happen in any family.Summary: Because of the social nature of the mankind, it must live in structured societies. Family is the medium for him where he is born, raised, socializes and prepares for his future life. It is normal sentiments of love, mercy and tolerance which dominate in a family. But despite this, it is possible for a family member to be a transgressor against another family member’s rights. Emotions like jealousy and hostility can cause violence between siblings. Psychologists generally attribute the source of this kind of violence to the parents’ failure to show equal love and affection to all children. While this is an important cause for violence among the siblings, craving for attention and acceptance from society, trying to achieve material and sensual superiority and desire for social success can incite feelings of envy among the siblings. While feelings of jealousy is unproblematic when its intensity can be considered normal, it can cause psychological imbalance if it increases to the level beyond manageable limits. If the latter case occurs, this produces a state of mind where a sibling becomes capable of committing every act of transgression to another sibling, which is the most important cause for the violence among siblings.Archetypical stories of Cain and Abel, and Prophet Joseph in the Qur’ān provide some clues pertaining to recognition and prevention of violence among the siblings. In these two parables, the real reason for envy does not lie in the other sibling. According to the Qur’ān, the true reason for this envy is attributed exclusively to the transgressor. In the parable of Cain and Abel, source of the problem between the siblings is the sacrificial offering to Allah. While the offering of Abel was accepted, Cain’s was not. Cain felt jealous and threatened his brother with death. Facing with his brother’s threat, Abel stayed firm and peaceful, said to his brother that if he were to attack him, he will not retaliate even for self-defence. He reminded Cain that his envy and anger was not due to him, Abel. Abel reminded Cain that the act that Cain was contemplating was a great sin in Allah’s eyes and that it is punishable by eternal hellfire. Cain, despite these warnings, went on to implement his intention of murder successfully.When we inspect the parable we can see that Abel was free from any guilt on his part for his brother’s envy which is the source of his transgression. His sacrifice was accepted because Abel was among the pious and this doesn’t harm or effect negatively Cain in anyway. Therefore the main cause for the jealousy of Cain is his unworthiness in the eyes of Allah, in reality, the reason is solely Cain himself. Therefore it is totally unfair when Cain put the blame on his brother Abel. By the way of this example, the Qur’ān reminds mankind not to blame others for his problems and to take responsibility. Envy, which is the main reason for violence among siblings, will cloud judgment and prevent clear thinking. In the parable of Cain and Abel, the Qur’ān recommends not to taunt the already jealous sibling by way of words and actions and instead, encourages warning against the grave consequences of evil intentions both in this world and in the hereafter. In the parable of Prophet Joseph, because of jealousy of their father from Joseph, bigger brothers of Joseph planned to kill him but they give up on the idea of killing him and instead they dumped him in a well. Later on in the parable, some merchant finds Joseph and brings him to Egypt. There, Joseph becomes a high ranking statesman and meets with his older brothers. Because of the famine, older brothers are in need of Joseph for food and asks him for it, without knowing that the person they are asking from is their little brother, Joseph. Although Joseph faces with his brothers on a superior position his behavior exemplifies the best course of action to end violence among the siblings. In order to remove animosity and callousness from his brothers’ heart, the gradual plan that Joseph had implemented is a great example for healing the wounds that violence among the siblings can cause. It is unreasonable to expect all the animosity and jealousy that brothers of Joseph held for years to go away completely in a moment. Prophet Joseph did not remind his brothers of their crime, on the contrary he was very generous to them. He brought their father and their brother Benjamin to Egypt and in front of them Prophet Joseph forgave his older brothers for the crimes they had committed against him. In this way, Prophet Joseph prevented his brothers potentially denying every transgression they did if he were to confront them in their first meeting, and made them ready to accept their evil deeds.Parables of Cain and Abel and Prophet Joseph are important for recognizing that envy can destroy the mercy that the siblings innately have for each other. It is understood from the parables that envy must be controlled and violence can’t be realized under any circumstances. It is clear from these parables that violence is never a solution for the jealousy among the siblings. A positive and viable solution would be for Cain to seek Allah’s approval instead of killing Abel and for brothers of Joseph this would be to earn their father’s love and respect. Introspection and analysis regarding possible reasons for jealousy and trying to resolve them and striving to be a better human, sibling, or child is a solution prescribed by the Qur’ān. Also, importance of speaking in a soft tone with the person who is experiencing intense jealousy, avoiding provocative language and behavior and trying every possible way to set this person straight is emphasized. The Qur’ān reminds us through these two parables that the human nature is prone to evil suggestions from the satan and for this reason humans need generous and benevolent help from others in order to clear themselves from these evil temptations. (shrink)

Children conceived in order to donate biological material to save the life of an already existing child are known as 'saviour siblings'. The primary reasons that have been offered against the practice are: (i) creating a saviour sibling has negative impacts on the created child and (ii) creating a saviour child represents a wrongful procreative motivation of the parents. In this paper we examine to what extent the creation of saviour siblings actually presents a special case in procreative (...) ethics. Although we do not deny that there is a unique feature present in the saviour sibling case—namely, that the child was created to save their sibling’s life, we argue that the distinctive feature of being a saviour sibling does not make the procreative act wrong. Our claim is that the features that would make the creation of a particular saviour sibling (im)permissible are the same features that would make the creation of any child (im)permissible. Our conclusion is that saviour siblings—in relation to the reasons for the (im)permissibility of their creation—are not a special case for procreative ethics. (shrink)

The “Dead Donor Rule” (DDR) is an important injunction shaping the field of organ retrieval and scholarly assessments of specific retrieval practices’ permissibility (e.g., Pasquerella, Smith, and...

The issues of religious proselytization as well as the construction of house of worship are of main contentious topics inciting tensions between religious adherents, particularly between the minority Christians and the majority Muslims in contemporary Indonesia. This article discusses these two inter-religious problems and poses a question to extent that the competition between Muslim and Christians, both in their missionary activities and the building of new house of worship, inflicting inter-religious relation in contemporary Indonesia. Taken some cases as points of (...) discussion, this article further offers that inclusive dialogue and social justice are solutions to minimize—even to prevent—the worsening tension between Muslim and Christians. (shrink)

Philosophy has long been concerned with ‘moral status’. Discussions about the moral status of children, however, seem often to promote confusion rather than clarity. Using the creation of ‘savior siblings’ as an example, this paper provides a philosophical critique of the moral status of children and the moral relevance of parenting and the role that formative experience, regret and relational autonomy play in parental decisions. We suggest that parents make moral decisions that are guided by the moral significance they (...) attach to children, to sick children and most importantly, to a specific sick child (theirs). This moral valorization is rarely made explicit and has generally been ignored by both philosophers and clinicians in previous critiques. Recognizing this, however, may transform not only the focus of bioethical discourse but also the policies and practices surrounding the care of children requiring bone marrow or cord blood transplantation by better understanding the values at stake behind parental decision making. (shrink)

It is widely agreed among health professionals that couples using donor insemination should be offered counselling on the topic of donor conception disclosure. However, it is clear from the literature that there has long been a lack of agreement about which counselling approach should be used in this case: a directive or a non-directive approach. In this paper we investigate which approach is ethically justifiable by balancing the two underlying principles of autonomy and beneficence. To overrule one principle (...) in favour of another, six conditions should be fulfilled. We analyse the arguments in favour of the beneficence principle, and consequently, a directive approach. This analysis shows that two conditions are not met; the principle of autonomy should not be overridden. Therefore, at this moment, a directive counselling approach on donor conception disclosure cannot be ethically justified. (shrink)

As usually understood, the Dead Donor Rule (DDR) for organ donation requires either that (1) the donor is already dead (which legally occurs when death is determined by neurological criteria), and/or that (2) organ procurement does not cause the donor’s death.

According to international scientific medical consensus, death is a biological, unidirectional, ontological state of an organism, the event that separates the process of dying from the process of disintegration. Death is not merely a social contrivance or a normative concept; it is a scientific reality. Using this paradigm, the international consensus is that, regardless of context, death is operationally defined as “the permanent loss of the capacity for consciousness and all brainstem function. This may result from permanent cessation of circulation (...) or catastrophic brain injury. In the context of death determination, ‘permanent’ refers to loss of function that cannot resume spontaneously and will not be restored through intervention.” The word “permanent” replaces “irreversible” (used in the United States’ 1980 Uniform Declaration of Death Act) in this new definition, arguably invented to allow donation after circulatory determination of death (DCDD) while still complying with the dead donor rule. I will show that this invention fails, for at least four reasons. (shrink)

Carpendale & Lewis (C&L) provide a convincing argument for how children construct social understanding through social interaction. Certainly mothers are important in family interaction; however, sibling interaction may also be key in the process of developing social understanding. In particular, the highly affective and reciprocal dynamics of the sibling relationship in both positive and conflictual interaction may be critical.

Some screening tests for donor blood that are used by blood services to prevent transfusion-transmission of infectious diseases offer relatively few health benefits for the resources spent on them. Can good ethical arguments be provided for employing these tests nonetheless? This paper discusses—and ultimately rejects—three such arguments. According to the ‘rule of rescue’ argument, general standards for cost-effectiveness in healthcare may be ignored when rescuing identifiable individuals. The argument fails in this context, however, because we cannot identify beforehand who (...) will benefit from additional blood screening tests. On the ‘imposed risk’ argument, general cost-effectiveness standards do not apply when healthcare interventions impose risks on patients. This argument ignores the fact that imposing risks on patients is inevitable in healthcare and that these risks can be countered only within reasonable limits. Finally, the ‘manufacturing standard’ argument premises that general cost-effectiveness standards do not apply to procedures preventing the contamination of manufactured medical products. We contend that while this argument seems reasonable insofar as commercially manufactured medical products are concerned, publicly funded blood screening tests should respect the standards for general healthcare. We conclude that these particular arguments are unpersuasive, and we offer directions to advance the debate. (shrink)