Ethical quandaries around expanded carrier screening in third-party reproduction.

Although current screening methods of gamete donors are capable of reducing the incidence of genetic anomalies in donor offspring below general population levels, targeted screening for a large number of conditions (expanded carrier screening or ECS) could be considered as part of the routine selection procedure for gamete donors. There are, however, important drawbacks to its practical implementation. Excluding all carriers of severe recessive monogenic pediatric disorders would disqualify virtually all donors, and other approaches negatively affect cost (and therefore access), present dilemmas in regard to disclosure of genetic findings, and/or overburden the intended parents. In all of the scenarios considered, adequate genetic counseling will be of central importance. Besides looking at benefits and drawbacks of possible ways of implementing ECS, we also examine whether a moral obligation exists to adopt ECS at all and on whose shoulders such an alleged obligation would rest: policymakers, medical staff at fertility clinics, sperm and egg banks, the intended parents? We argue that given the small risk reduction brought about by ECS, the possible negative effects of its implementation, and the absence of widespread preconception carrier screening in the general population, it is inconsistent to argue that there is a moral obligation to perform ECS in the context of donor conception. Finally, implications for the donors are discussed.

Advances in cryopreservation: we are not frozen in time.

Life is like riding a bicycle, to keep your balance you must keep moving. -Albert Einstein.

Ethical, moral, and theological insights into advances in male pediatric and adolescent fertility preservation.

The successful treatment of boys with cancer has led to increasing attention to preserving their quality of life after completing cancer therapy. One of the top priorities for living a full life is keeping open the opportunity to have children. While sperm banking for males facing sterilizing cancer treatment can be effective, this approach requires subsequent use of reproductive procedures such as in vitro fertilization (IVF) or intrauterine insemination (IUI) to achieve a pregnancy. Advances in fertility preservation techniques may allow pre-pubertal boys to conceive using advanced stem cell technologies and stem cell transplantation in the future. This review summarizes the ethical positions of leading medical societies and explores the religious and moral stances of major religious institutions regarding these options.

The Race Idea in Reproductive Technologies: Beyond Epistemic Scientism and Technological Mastery.

This paper explores the limitations of epistemic scientism for understanding the role the concept of race plays in assisted reproductive technology (ART) practices. Two major limitations centre around the desire to use scientific knowledge to bring about social improvement. In the first case, undue focus is placed on debunking the scientific reality of racial categories and characteristics. The alternative to this approach is to focus instead on the way the race idea functions in ART practices. Doing so reveals how the race idea (1) helps to define the reproductive "problems" different groups of women are experiencing and to dictate when and how they should be "helped"; (2) helps to resolve tensions about who should be considered the real parents of children produced by reproductive technologies; and (3) is used to limit ART use where that use threatens to denaturalize the very sociopolitical landscape the race idea has created. In the second case, scientific knowledge regarding reproduction is thought to call for technological control over that reproduction. This leads to an overemphasis on personal responsibility and a depoliticization of racialized social inequalities.

"Obligated aliens": recognizing sperm donors' ethical obligation to disclose genetic information.

Sperm donors' obligations are typically constrained to the immediate circumstances surrounding the donation and to its time frame. This paper makes the case for recognizing an ongoing ethical obligation that binds sperm donors to disclose, in a timely manner, meaningful genetic information to recipients and donor-conceived children. The paper delineates and conceptualizes the suggested (potentially reciprocal) duty and argues that it is not the genetic link between the donor and the donor-conceived child that binds donors by said duty, but rather social responsibility. Accordingly, an original perception of the donor as an obligated alien is suggested and developed. The main thesis of the paper is supported inter alia by a comparison between transmitting infectious diseases and passing faulty genes on to donor-conceived children. The paper also provides an in-depth analysis of the conflicting interests of the parties generated by such an obligation and proposes a model for embedding this ethical duty in a (legal) contractual framework.

Gamete donation in France: the future of the anonymity doctrine.

In France, since the approval of the first bioethics laws in 1994, the principle of the anonymity of sperm donors has prevailed. This choice is regularly challenged, namely by children who have been conceived under these conditions and have now reached adulthood. In this paper, we will briefly describe the reasons that led practitioners of assisted reproduction to endorse the anonymity principle in 1994. Secondly, we will elaborate on the reasons why this principle is becoming so controversial today. Finally, we shall examine two possible outcomes of the debate, highlighting their respective legitimacy as well as their consequences, as far as the rights of children, the notion of the family, and medical practice are concerned.

Full-sibling embryos created by anonymous gamete donation in unrelated recipients.

OBJECTIVE: To report the rare occurrence of full-sibling embryos in unrelated women using independently chosen donor sperm and donor oocytes in two different cycles unintentionally created at our IVF program, and to discuss the concept of disclosure to the patients. DESIGN: Case report. SETTING: Academic IVF program. PATIENT(S): Two women independently undergoing donor recipient cycles with anonymous donor oocytes and donor sperm. INTERVENTION(S): Both women received oocytes from the same donor several months apart and then by coincidence selected the same anonymous sperm donor to create anonymous full-sibling embryos. MAIN OUTCOME MEASURE(S): Clinical pregnancy after donor-recipient IVF cycle. RESULT(S): Both women conceived using the same donor sperm and donor oocytes in independent cycles, resulting in simultaneous pregnancy of full siblings. CONCLUSION(S): As providers with the knowledge that anonymous full sibling embryos have been created, we may have an obligation to disclose this information to the patients.

Who should be offered sperm banking for fertility preservation? A survey of UK oncologists and haematologists.

BACKGROUND: Fertility after cancer therapy is a significant quality-of-life concern for many patients, their partners and families. Authoritative guidance states that men whose fertility may be affected by impending therapies should be offered sperm banking. Yet some patients are not offered this opportunity and are thereby disadvantaged. We sought to understand oncologists' and haematologists' decision making concerning sperm-banking referrals. DESIGN: We surveyed all oncologists and haematologists on the Royal College of Radiotherapists' Faculty of Oncology and British Society for Haematology circulation lists. RESULTS: From 2357 across all specialties, 499 responses were received: 253 haematologists and 246 oncologists (21% response rate). Twenty-one percent of respondents were unaware of local policies on sperm banking and 42% considered that sperm banking should be offered to more patients. Respondents' decisions reveal either assumptions about patients' needs based on characteristics such as age, sexual orientation and severity of illness or the influence of their own moral conclusions upon their patients. The survey identified paucity of training for clinicians, information for patients and systematic recording of discussions about fertility. CONCLUSIONS: A robust care infrastructure supporting male fertility storage is needed urgently to include targeted information for cancer clinicians and patients, identified individuals responsible for coordination and documentation of discussions with patients.

[Ethical thinking on sperm use in human assisted reproductive technology].

The use of sperm, which is indispensable for embryo formation in human assisted reproductive technology (ART), has contributed a lot to social harmony, home happiness and advancement of related science and technology. However, it also yields a series of ethical problems. Proper handling of the contradictory relationship of ethical principles with science and technology is conducive to the healthy development of human ART.

Managing novel reproductive injuries in the law of tort: the curious case of destroyed sperm.

In view of developments in reproductive medicine, clinical mishaps in this domain are beginning to give rise to 'injuries' not easily accommodated within the English law of negligence. While 'personal injury' is typically understood as manifesting a deleterious 'physical' dimension, cases involving the negligent destruction of cryopreserved sperm, as recently litigated in Yearworth & Ors v Bristol NNN Trust (2009), and other media reported mishaps in fertility treatment do not straightforwardly possess this quality. Without modification, the traditional tortious conception of 'personal injury' in English law will not be able to address novel claims. Critically, however, nor do alternative modes of redress seem to offer ease of application. Focusing upon the controversial Yearworth case and exploring what is seen as an unpromising framing of loss, the note argues that there is now an urgent need to rethink what counts as 'personal injury'. Arguing for the formal recognition of'reproductive injury' as an independent head of damage in negligence, and illustrating the presence of judicial support for that approach, the comment suggests that in light of the difficult challenges that lie in the wake of Yearworth, such a development may be not only desirable but necessary.

The ethical debate on donor insemination in China.

This article gives an overview of the ethical thinking about donor insemination among Chinese ethicists. We analysed the ethical arguments dedicated to the use of donor spermatozoa published in the important bioethics journals of China of the last 15 years. On the one hand, the general Confucian values strongly favour the genetic link as it fits with the traditional importance attached to the continuation of the family line. Therefore, artificial insemination by donor (AID) is highly controversial in China because the involvement of a third party (the donor) severs the genetic link between the husband and his family. On the other hand, procreation is regarded as an important aspect of Confucian filial piety and it is a basic right of every human being to enjoy a family life. AID should be thought of as a means to help infertile couples to overcome infertility. Nowadays, Chinese bioethicists are trying to reinterpret Confucianism in order to adapt it to modernity. One such reinterpretation focuses on the affectionate rather than the genetic tie between parents and child. As the application is still new in China, more discussion and open debate on ethical aspects is needed.

Sperm retrieval from terminally ill or recently deceased patients: a review.

OBJECTIVE: Requests for sperm extraction in terminally ill or recently deceased patients have been increasing with the gained acceptance and success of assisted reproductive techniques such as in vitro fertilization and intracytoplasmic sperm injection. This review aims to outline the many challenges associated with these requests. MATERIALS AND METHODS: The medical literature surrounding ethical and legal issues of posthumous sperm extraction was examined. RESULTS: Several issues within the field of sperm extraction in the terminally ill patient and the postmortem patient still arouse a significant amount of debate and controversy. One controversial factor surrounds the issue of consent for the tissue extraction and determining when family consent is valid. Other discussions have involved ethical issues, logistics (including cost), and legal issues. CONCLUSIONS: A medical center protocol governing sperm extraction from terminally ill or recently deceased patients would be beneficial, and would likely alleviate stress among the patients' families and healthcare providers. To overcome some of the difficulties surrounding the issue of consent, it might also be valuable for men about to get married or enter into a similar relationship to document their wishes for sperm retrieval should a tragic situation arise. This could be done in the same way that they would prepare a living will.

Designing deaf babies and the question of disability.

This article explores the recent controversy surrounding a Deaf lesbian couple's deliberate attempt at finding a Deaf donor to increase their chances of having a d/Deaf baby. Many have criticized the Deaf couple for harming their child; Deaf advocates have responded that the couple's decision reflects a natural cultural desire. This article seeks to explore how the medical model of disability implicitly used on both sides of the debate has obscured important points. Once this controversy takes into consideration the social construction of disability, the ethical defense of seeking a deaf child gains further support. This leads to the ironic claim that seeking a deaf child could actually mitigate the conditions of disability within the family.