[Non eligibility criteria for hematopoietic stem cell donors: Guidelines from the Francophone Society of Bone Marrow Transplantation and Cellular Therapy (SFGM-TC)]. / Critères de non-qualification des donneurs des cellules souches hématopoïétiques : recommandations de la Société francophone de greffe de moelle et de thérapie cellulaire (SFGM-TC).

The evolution of HLA typing and transplantation techniques makes it easier to identify a donor for hematopoietic stem cell (HSC) transplantation. This activity, strongly regulated by regulatory or normative texts, implies in addition biological, medical, para-medical and sometimes psychological evaluations. The benefit/risk discussion is complicated because it must take into account the benefit/risk ratio for the recipient, and the donor risk. No Evidence-Based Medicine data is available and serious events are very rare situations. Biovigilance declarations and their analysis are of fundamental importance. Certain obvious and definite contraindications could be detected very early in the process. It is important to assess whether a risk factor or pathology contributes to increasing the risk associated with collection. In case of recipient risk, the situation should be discussed with the patient team. These recommendations focus on adult peripheral blood HSC donors. They refer to donor information, confidentiality of exchanges, the impact of moral or material pressures, declarations of biovigilance, collegiality and traceability of difficult decisions, desirable experience and training for doctors in charge, use of expert advice informed by an explicit exchange on the possible risks, parsimony of therapeutic interventions and minimization of risks for the donor. We also recommend creation, availability and use by the community of tools and documents (registries, questionnaires, synthetic recommendations, feedback, and collegial qualification meetings) useful for practice.

Pre-implantation HLA matching: The production of a Saviour Child.

Pre-implantation genetic diagnosis (PGD) requires the use of assisted reproductive technology (ART) to create several pre-implantation-stage embryos, followed by biopsy of embryonic cells for genetic testing and transfer of selected embryos to the womb to establish a pregnancy. HLA typing of ART-created embryos was first reported in 2001. The aim is to establish a pregnancy that is HLA-compatible with an affected sibling who requires haematopoietic stem cell transplantation. HLA-typing can be performed with or without PGD for the exclusion of a single-gene disorder. Haematopoietic stem cells collected from the umbilical cord blood or the bone marrow of the HLA-matched donor sibling born, or a combination of both sources, are used for transplantation and cure of the affected sibling. The procedure is multistep and technically challenging. All specialists involved must aim to adequately support and counsel prospective parents. Results have so far been encouraging, with many documented positive outcomes of affected children being cured.

Savior siblings, parenting and the moral valorization of children.

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.

Preimplantation genetic diagnosis with HLA matching - a way to save a child.

Preimplantation genetic diagnosis can be used to establish a pregnancy with an embryo that is human leukocyte antigen (HLA)-matched to a sibling having a hematological or immunological disease and needing a life-saving bone marrow transplantation. The ethical aspects of this procedure have been discussed intensively. The procedure applies where no unrelated HLA-matching donor is available or when transplantation from an HLA-matching sibling is considered a better solution. It is only offered in a limited number of centers in Europe as this is a challenging procedure. Where both HLA matching and diagnosis of a dominant disease are necessary, only a small proportion of the embryos can be used, and the procedure is not always technically feasible. The clinical pregnancy rate per cycle started is much lower than following normal in vitro fertilization (IVF) due to a high cycle cancellation rate, but the success rate is only somewhat lower when measured per transfer.

Intramedullary spinal cord implantation of human CD34+ umbilical cord-derived cells in ALS.

Amyotrophic lateral sclerosis (ALS) is a devastating neurodegenerative disorder with marginal therapeutic options. Degeneration of motor neurons in the primary motor cortex, brainstem and spinal cord lead to rapidly progressive paralysis and finally to death due to respiratory failure. As pharmacological therapies have failed to provide sufficient neuroprotective effects in ALS, transplantation of stem or progenitor cells is considered a promising treatment strategy. Cell transplantation approaches in ALS mainly aim to generate a neuroprotective environment for degenerating motor neurons by transplantation of non-neuronal cells, rather than to replace lost motor neurons. We present a 63-year-old male patient suffering from ALS who underwent intramedullary thoracic spinal cord implantation of human CD34(+) umbilical cord-derived haematopoietic progenitor cells with a three-year follow up after transplantation.

[Ethical aspects of preimplantation genetic diagnosis (PGD)]. / Les aspects éthiques du diagnostic pré-implantatoire (DPI).

The controversy surrounding PGD has not abated in recent times. This is especially the case for PGD-based tissue typing, which is used to select a future child who could serve as a stem cell donor for an older sick sibling. We examine three types of ethical argument cited against PGD in general, and specifically against tissue-typing PGD. These arguments focus on the moral status of the early embryo, the eugenics issue, and the charge that the future child is being exploited. We conclude that none of these three arguments is unassailable, and that it is the reproductive freedom of couples considering PGD that should prevail.

Preimplantation diagnosis to create 'saviour siblings': a critical discussion of the current and future legal frameworks in South Africa.

Pre-implantation genetic diagnosis (PGD) is a technology used in conjunction with in vitro fertilisation to screen embryos for genetic conditions prior to transfer. It was initially developed to screen mutations for severe, irreversible, genetic conditions. Currently, PGD makes it possible to select against more than 100 different genetic conditions. It has been proposed as a method for creating a tissue-matched child who can in turn serve as a compatible stem cell donor to save a sick sibling in need of a stem cell transplant. The advantage of this method is that it provides genetic information before implantation of an embryo into the womb, making it possible to ensure that only tissue-matched embryos are transferred to the uterus. A couple can therefore avoid the difficult choice of either terminating the pregnancy at a later point if the fetus is not a match, or extending their family again in the hope that their next child will be tissue compatible. Many people have expressed disapproval of the use of PGD for this purpose, and it is associated with many conflicting interests including religion, ethics as well as legal regulation. In order to manage these issues some jurisdictions have created legal frameworks to regulate the use of this technology. Many of these are modelled on the UK's Human Fertilisation and Embryology Authority and its guardian legislation. This paper critiques the current and future South African legal framework to establish whether it is able to adequately regulate the use of PGD as well as guard against misuse of the technology. It concludes that changes are required to the future framework in order to ensure that it regulates the circumstances in which PGD may occur and that the Minister of Health should act expediently in finalising draft regulations which will regulate PGD in the future.

Searching for otherness: the view of a novel.

The ethical issues concerning the use of PGD (Preimplantation Genetic Diagnosis) to select embryos of a particular HLA (Human Leukocyte Antigen) type are numerous. They arise from the potentially conflicting interests between those of the pre-existing child, the subject of a treatment which may be curative, and those of the sibling to be created, who cannot give consent to the donation, together with the problem of the destruction of potentially healthy embryos. This essay focuses on the web of vulnerabilities affecting the parents, the sick child and the "saviour sibling," while addressing three areas: science, bioethics and literature. The novel My Sister's Keeper, by Jodi Picoult, provides the reader with an in-depth view of the conflicting interests and emotional problems that affect the Fitzgeralds, a family experiencing the pain of seeing one of their children dying while facing the tragic consequences of trying to save this child by having another offspring.

Saviour siblings and collective family interests.

In this article, I will explore the ethical concerns arising out of the use of preimplantation tissue typing (PTT) to create saviour siblings. There are two main ethical concerns about the welfare of the child to be born as a result of PTT. The first is whether the child to be born is treated as a commodity, as simply a means to save the life of his or her sibling. The second is whether the child to be born will be harmed as a result of PTT, either physically, psychologically or socially. These two ethical concerns reflect an individualistic approach to the welfare of the child, whose interests are treated as largely separate to the interests of other family members. I will argue that the welfare of the child born as a result of PTT should be conceived more broadly to include not only the child's individual interests, but also the collective interests the child shares with his or her family. I base this broader conception of welfare on the notion of human flourishing, which recognises that the welfare of a child is inextricably connected to the welfare of the intimate collective that is his or her family. The collective interests of intimate family members are particularly relevant in the context of PTT, as the members are engaged in a shared journey to save the life of an ill child.

Inductive risk and justice in kidney allocation.

How should UNOS deal with the presence of scientific controversies on the risk factors for organ rejection when designing its allocation policies? The answer I defend in this paper is that the more undesirable the consequences of making a mistake in accepting a scientific hypothesis, the higher the degree of confirmation required for its acceptance. I argue that the application of this principle should lead to the rejection of the hypothesis that 'less than perfect' Human Leucocyte Antigen (HLA) matches are an important determinant of kidney graft survival. The scientific community has been divided all along on the significance of partial antigen matches. Yet reliance on partial matches has emerged as one of the primary factors leading blacks to spend a much longer time than whites on the waiting list for kidneys, thereby potentially impacting the justice of the kidney allocation policy. My case study illustrates one of the legitimate roles non-epistemic values can play in science and calls into question the ideal of a value-free science.

The dilemma of unintentional discovery of misattributed paternity in living kidney donors and recipients.

PURPOSE OF REVIEW: To discuss the issue of misattributed paternity and highlight the complex implications transplant centers must consider when this unsought information is discovered. Policies should be implemented to guide transplant centers in consistent and ethical treatment of this sensitive issue. Effective policy development will require close examination and transparent discussion by the transplant community. RECENT FINDINGS: Despite the fact that little attention has been given to the discovery of misattributed paternity in the field of transplant, transplant centers do encounter this dilemma. The burden of deciding how to treat the information is significant and reaching consensus can be difficult. Recent findings suggest that policy implementation regarding this issue would help to guide practice for professionals who encounter discovery of this unsought information. SUMMARY: This review explores the complex considerations that must occur when misattributed paternity is unintentionally uncovered in living donor-recipient pairs and recommends that the transplant community pursue policies to guide practice in the treatment of this issue.

Private cord blood banking: experiences and views of pediatric hematopoietic cell transplantation physicians.

OBJECTIVE: Private cord blood banks are for-profit companies that facilitate storage of umbilical cord blood for personal or family use. Pediatric hematopoietic cell transplantation physicians are currently best situated to use cord blood therapeutically. We sought to describe the experiences and views of these physicians regarding private cord blood banking. PARTICIPANTS AND METHODS: We e-mailed a cross-sectional survey to pediatric hematopoietic cell transplantation physicians in the United States and Canada; 93 of 152 potentially eligible physicians (93 of 130 confirmed survey recipients) from 57 centers responded. Questions addressed the number of transplants performed by using privately banked cord blood, willingness to use banked autologous cord blood in specific clinical settings, and recommendations to parents regarding private cord blood banking. RESULTS: Respondents reported having performed 9 autologous and 41 allogeneic transplants using privately banked cord blood. In 36 of 40 allogeneic cases for which data were available, the cord blood had been collected because of a known indication in the recipient. Few respondents would choose autologous cord blood over alternative stem cell sources for treatment of acute lymphoblastic leukemia in second remission. In contrast, 55% would choose autologous cord blood to treat high-risk neuroblastoma, or to treat severe aplastic anemia in the absence of an available sibling donor. No respondent would recommend private cord blood banking for a newborn with 1 healthy sibling when both parents were of northern European descent; 11% would recommend banking when parents were of different minority ethnicities. CONCLUSIONS: Few transplants have been performed by using cord blood stored in the absence of a known indication in the recipient. Willingness to use banked autologous cord blood varies depending on disease and availability of alternative stem cell sources. Few pediatric hematopoietic cell transplantation physicians endorse private cord blood banking in the absence of an identified recipient, even for mixed-ethnicity children for whom finding a suitably matched unrelated donor may be difficult.

Procreative reasons-relevance: on the moral significance of why we have children.

Advances in reproductive technologies - in particular in genetic screening and selection - have occasioned renewed interest in the moral justifiability of the reasons that motivate the decision to have a child. The capacity to select for desired blood and tissue compatibilities has led to the much discussed 'saviour sibling' cases in which parents seek to 'have one child to save another'. Heightened interest in procreative reasons is to be welcomed, since it prompts a more general philosophical interrogation of the grounds for moral appraisal of reasons-to-parent, and of the extent to which such reasons are relevant to the moral assessment of procreation itself. I start by rejecting the idea that we can use a distinction between 'other-regarding' and 'future-child-regarding' reasons as a basis on which to distinguish good from bad procreative reasons. I then offer and evaluate three potential grounds for elucidating and establishing a relationship between procreative motivation and the rightness/wrongness of procreative conduct: the predictiveness, the verdictiveness, and the expressiveness of procreative reasons.

The future (r)evolution of preimplantation genetic diagnosis/human leukocyte antigen testing: ethical reflections.

There has been increasing support for combining preimplantation genetic diagnosis (PGD) for specific diseases with a test for human leukocyte antigens (HLA) because the generation of HLA-matched umbilical cord blood cells may save the life of a diseased sibling. To date, this procedure has taken place in the context of conceiving another child--PGD/HLA testing type 1. However, it may well become possible to perform PGD/HLA testing outside this context, that is, to select matched embryos from which embryonic stem cells could be derived and used in cell therapy--PGD/HLA testing type 2. A proactive ethical analysis is needed and is presented in this article. Although PGD/HLA testing type 1 can be morally justified, the risks, pitfalls, and practical limitations of this procedure make it necessary to develop alternative strategies. PGD/HLA testing type 2 may provide an alternative strategy. From an ethical point of view, the controversial issue is that this procedure creates embryos purely for instrumental use. However, given the dominant view that the preimplantation embryo has only limited moral value, this alternative may be as morally justified as PGD/HLA testing type 1.

Preimplantation HLA typing: having children to save our loved ones.

Preimplantation 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.

[Preimplantation genetic diagnosis in order to choose a saviour sibling]. / Le diagnostic préimplantatoire en vue de choisir un enfant sauveur de fratrie.

Preimplantation genetic diagnosis with HLA matching in order to bring about the birth of a saviour sibling is not mere instrumentalisation of the future child, as long as the post natal test is used and the future child will be looked after with the same love and care as if he/she had not been selected as well for the purpose.