Forbidden medically assisted sex selection in Sunni Muslims: a qualitative study.

RESEARCH QUESTION: Son preference is a phenomenon typically prevalent in traditional societies in the Middle East and in East and South Asia. Hence, various sex-selection practices, either natural or medically assisted, have emerged. Islamic law forbids medically assisted sex selection for social reasons. Our aim was to examine the narratives of Sunni Muslim couples who underwent sex selection treatment by using sperm sorting and to understand their reasons for doing so. DESIGN: A qualitative phenomenological study involving in-depth, face-to-face interviews with 31 women who gave birth to a male baby after undergoing sperm-sorting treatment, preimplantation genetic testing sex selection, or both, in a private clinic. RESULTS: Interviewees spoke about the ethical dilemma they faced in choosing to violate the religious prohibition against sex selection; they explained the reasons why they opted to undergo sperm-sorting treatment and why the utmost secrecy surrounded it. CONCLUSIONS: Some Sunni Muslim couples privately defy the Sunni Muslim orthodoxy on their way to becoming parents to male offspring. Sons are preferred over daughters because of the traditional value attached to male offspring in Muslim culture. Therefore, couples who have only daughters may face an ethical dilemma of whether to obey the religious prohibition against sex selection or to violate it and enjoy societal acceptance and recognition for having a son.

Arbitrating Abortion: Sex-selection and Care Work among Abortion Providers in England.

The UK's on-going sex-selective abortion (SSA) controversy remains a major obstacle to the liberalization of national abortion governance, and is an issue broadly attributed to a "cultural" preference for sons among South Asian women. We conceptualize how healthcare professionals "arbitrate" requests for SSA by exploring the tension between its legal status and how requests are encountered by abortion providers. SSA is framed in this article as a legitimate care service that can support providers to meet the diverse reproductive health needs of women to the full extent of the law.

Sex selection and non-invasive prenatal testing: A review of current practices, evidence, and ethical issues.

Non-invasive prenatal testing (NIPT) can determine the sex of the fetus very accurately and very early in gestation. There are concerns that the ease, timing, and accuracy of NIPT sex determination will facilitate sex-selective termination of pregnancy (TOP). Here, we review current practices, the evidence for a link between NIPT and sex-selective TOP, and associated ethical issues. Sex-selective TOP, usually motivated by son preference, has had serious demographic consequences in countries such as India and China. Currently, ultrasound is the primary method by which parents determine the sex of the fetus. The diffusion of ultrasound technology has had a direct impact on the rates of sex-selective TOP. Although NIPT is currently more costly, it is feasible that increased uptake of this technology could have a similar effect. Partly because NIPT is a relatively recent development in prenatal screening, there is little data on the impact of NIPT on sex selection practices. Evidence that NIPT is playing a role in sex-selective TOP remains largely anecdotal. Further research is required to assess and quantify TOP resulting from NIPT sex determination. The use of these technologies for sex selection raises a number of ethical issues, in addition to practical demographic consequences.

Upsetting the balance on sex selection.

It is widely assumed that the strongest case for permitting non-medical sex selection is where parents aim at family balance. This piece criticizes one representative attempt to justify sex selection for family balance. Kluge (2007) assumes that some couples may seek sex selection because they hold discriminatory values, but this need not impugn those who merely have preferences, without evaluative commitments, for a particular sex. This is disputed by those who see any sex selection as inherently sexist because it upholds stereotypes about the sexes. This article takes an alternative approach. I argue that, even if we accept that preference-based selection is unobjectionable, a policy permitting selection for family balancing does a poor job of distinguishing between value-based and preference-based selection. If we wish to permit only preference-based sex selection we should seek to identify parents' motives. If we wish to justify a family balancing policy, other arguments are needed.

Ultrasound in rural India: a failure of the best intentions.

The Pre-Conception and Pre-Natal Diagnostic Techniques Act was written to prevent societally unacceptable harms including intentional sex selection. The pragmatism required to enforce this law has profound effects on the ability of rural Indians to access diagnostic ultrasonography. In so doing, it may have inadvertently placed a heavier burden on the poorest and worsened health inequity in India, creating serious ethical and justice concerns. It is time to re-examine and update the law such that diagnostic ultrasonography is widely available in even the most peripheral primary health and community health centres. Shorter, more accessible ultrasonography training courses should be offered; collaboration between radiologists and rural practitioners and facilities should be encouraged. Finally, modern ultrasound machines can carefully record all images via a "silent observer" modality. With some modifications to previously used silent observer modalities, this technology allows both greater access and better policing of potential misuse of ultrasound technology.

Accounting for the Moral Significance of Technology: Revisiting the Case of Non-Medical Sex Selection.

This article explores the moral significance of technology, reviewing a microfluidic chip for sperm sorting and its use for non-medical sex selection. I explore how a specific material setting of this new iteration of pre-pregnancy sex selection technology-with a promised low cost, non-invasive nature and possibility to use at home-fosters new and exacerbates existing ethical concerns. I compare this new technology with the existing sex selection methods of sperm sorting and Prenatal Genetic Diagnosis. Current ethical and political debates on emerging technologies predominantly focus on the quantifiable risk-and-benefit logic that invites an unequivocal "either-or" decision on their future and misses the contextual ethical impact of technology. The article aims to deepen the discussion on sex selection and supplement it with the analysis of the new technology's ethical potential to alter human practices, perceptions and the evaluative concepts with which we approach it. I suggest that the technological mediation approach (Verbeek, 2005, 2011) can be useful to ethically contextualize technologies and highlight the value of such considerations for the informed deliberation regarding their use, design and governance.

Comparing Non-Medical Sex Selection and Saviour Sibling Selection in the Case of JS and LS v Patient Review Panel: Beyond the Welfare of the Child?

The national ethical guidelines relevant to assisted reproductive technology (ART) have recently been reviewed by the National Health and Medical Research Council (NHMRC). The review process paid particular attention to the issue of non-medical sex selection, although ultimately, the updated ethical guidelines maintain the pre-consultation position of a prohibition on non-medical sex selection. Whilst this recent review process provided a public forum for debate and discussion of this ethically contentious issue, the Victorian case of JS and LS v Patient Review Panel (Health and Privacy) [2011] VCAT 856 provides a rare instance where the prohibition on non-medical sex selection has been explored by a court or tribunal in Australia. This paper analyses the reasoning in that decision, focusing specifically on how the Victorian Civil and Administrative Tribunal applied the statutory framework relevant to ART and its comparison to other uses of embryo selection technologies. The Tribunal relied heavily upon the welfare-of-the-child principle under the Assisted Reproductive Treatment Act 2008 (Vic). The Tribunal also compared non-medical sex selection with saviour sibling selection (that is, where a child is purposely conceived as a matched tissue donor for an existing child of the family). Our analysis leads us to conclude that the Tribunal's reasoning fails to adequately justify the denial of the applicants' request to utilize ART services to select the sex of their prospective child.

Engendering Harm: A Critique of Sex Selection For "Family Balancing".

The most benign rationale for sex selection is deemed to be "family balancing." On this view, provided the sex distribution of an existing offspring group is "unbalanced," one may legitimately use reproductive technologies to select the sex of the next child. I present four novel concerns with granting "family balancing" as a justification for sex selection: (a) families or family subsets should not be subject to medicalization; (b) sex selection for "family balancing" entrenches heteronormativity, inflicting harm in at least three specific ways; (c) the logic of affirmative action is appropriated; (d) the moral mandate of reproductive autonomy is misused. I conclude that the harms caused by family balancing are sufficiently substantive to override any claim arising from a supposed right to sex selection as an instantiation of procreative autonomy.

Bioethics and Biopolitics: Presents and Futures of Reproduction.

This Bioethics and Biopolitics: Presents and Futures of Reproduction symposium draws together a series of articles that were each submitted independently by their authors to the JBI and which explore the biopower axis in the externalization of reproduction in four contexts: artificial gestation (ectogenesis), PGD for sex selection, women's (reproductive) rights, and testicular cryopreservation (TCCP). While one contribution explores a "future" of reproduction, the other three explore a "present," or better, explore different "presents." What may counts as "present," and what may count as "future," has dramatically different connotations depending on the geographical declination of the tense.

How Sex Selection Undermines Reproductive Autonomy.

Non-medical sex selection is premised on the notion that the sexes are not interchangeable. Studies of individuals who undergo sex selection for non-medical reasons, or who have a preference for a son or daughter, show that they assume their child will conform to the stereotypical roles and norms associated with their sex. However, the evidence currently available has not succeeded in showing that the gender traits and inclinations sought are caused by a "male brain" or a "female brain". Therefore, as far as we know, there is no biological reason why parents cannot have the kind of parenting experience they seek with a child of any sex. Yet gender essentialism, a set of unfounded assumptions about the sexes which pervade society and underpin sexism, prevents parents from realising this freedom. In other words, unfounded assumptions about gender constrain not only a child's autonomy, but also the parent's. To date, reproductive autonomy in relation to sex selection has predominantly been regarded merely as the freedom to choose the sex of one's child. This paper points to at least two interpretations of reproductive autonomy and argues that sex selection, by being premised on gender essentialism and/or the social pressure on parents to ensure their children conform to gender norms, undermines reproductive autonomy on both accounts.

Toward an Ethically Sensitive Implementation of Noninvasive Prenatal Screening in the Global Context.

Noninvasive prenatal screening using cell-free DNA, which analyzes placental DNA circulating in maternal blood to provide information about fetal chromosomal disorders early in pregnancy and without risk to the fetus, has been hailed as a potential "paradigm shift" in prenatal genetic screening. Commercial provision of cell-free DNA screening has contributed to a rapid expansion of the tests included in the screening panels. The tests can include screening for sex chromosome anomalies, rare subchromosomal microdeletions and aneuploidies, and most recently, the entire fetal genome. The benefits of this screening tool are generally framed, by both providers and commercial laboratories, as enhancing reproductive autonomy and choice by providing an earlier, simpler, and more accurate screening while potentially reducing the need for invasive follow-up testing. The majority of the literature has explored these issues empirically or conceptually from a European or North American vantage point, one that assumes normative priorities such as individual reproductive autonomy and the clinical availability of maternal health care or prenatal screening programs within which cell-free DNA screening is offered. While its implementation has raised both challenges and opportunities, very little is known about real-world experiences and the implications of the rapid introduction of cell-free DNA screening outside of North America and Europe, especially in low- and middle-income countries. To begin addressing this gap in knowledge, we organized a four-day international workshop to explore the ethical, legal, social, economic, clinical, and practical implications of the global expansion of cell-free DNA screening. We describe eight key insights that arose from the workshop.

Use of Sex Selection Techniques for Social Reasons: A Menace.

Sex selection skewed towards males is a malady that our society is grappling with. The desire to have a child of preferred gender has encouraged people to move beyond the ambit of traditions and explore scientific methods. Despite the controversies around sex-selection for social reasons and strong regulatory mechanisms in place, the demand for such measures has not gone down. On the contrary, traditional practice of consuming indigenous medicines during pregnancy for a male child continues. Recent research highlights the harms of this practice in the form of birth defects and stillbirths. This has led to stricter enforcement of PCPNDT Act and has stimulated the propagation of messages on the harms of these practices in the community.

The Perfect Womb: Promoting Equality of (Fetal) Opportunity.

This paper aims to address how artificial gestation might affect equality of opportunity for the unborn and any resultant generation of "ectogenetic" babies. It will first explore the current legal obstacles preventing the development of ectogenesis, before looking at the benefits of allowing this technology to control fetal growth and development. This will open up a discussion of the treatment/enhancement divide regarding the use of reproductive technologies, a topic featured in various bioethical debates on the subject. Using current maternity practices in Western society as a comparator, this paper will conclude that neither naturally nor artificially gestated fetuses have interests that can conflict with those of potential parents who might want to use this technology to control fetal development. Such control may include selective implantation of embryos of a desired gender, deliberate choice of genetic traits, or maintenance of an ideal incubation environment to avoid fetal damage. Objections on the basis of disability as well as concerns regarding eugenics will be addressed. The paper will conclude that none of these objections are compelling grounds to prevent the development and use of ectogenesis technologies for the purpose of achieving specific reproductive goals, particularly when compared to current practices in pre-implantation genetic diagnosis and selective abortion on the grounds of undesired traits. As such, when deciding whether to support ectogenesis research, the enduring interests of parents must be the primary consideration, with societal concerns regarding potential misuse the only valid secondary consideration.

Public Perceptions of Ethical, Legal and Social Implications of Pre-implantation Genetic Diagnosis (PGD) in Malaysia.

Pre-implantation genetic diagnosis (PGD) became well known in Malaysia after the birth of the first Malaysian 'designer baby', Yau Tak in 2004. Two years later, the Malaysian Medical Council implemented the first and only regulation on the use of Pre-implantation Genetic Diagnosis in this country. The birth of Yau Tak triggered a public outcry because PGD was used for non-medical sex selection thus, raising concerns about PGD and its implications for the society. This study aims to explore participants' perceptions of the future implications of PGD for the Malaysian society. We conducted in-depth interviews with 21 participants over a period of one year, using a semi-structured questionnaire. Findings reveal that responses varied substantially among the participants; there was a broad acceptance as well as rejection of PGD. Contentious ethical, legal and social issues of PGD were raised during the discussions, including intolerance to and discrimination against people with genetic disabilities; societal pressure and the 'slippery slope' of PGD were raised during the discussions. This study also highlights participants' legal standpoint, and major issues regarding PGD in relation to the accuracy of diagnosis. At the social policy level, considerations are given to access as well as the impact of this technology on families, women and physicians. Given these different perceptions of the use of PGD, and its implications and conflicts, policies and regulations of the use of PGD have to be dealt with on a case-by-case basis while taking into consideration of the risk-benefit balance, since its application will impact the lives of so many people in the society.

WHAT ROLE SHOULD PUBLIC OPINION PLAY IN ETHICO-LEGAL DECISION MAKING? THE EXAMPLE OF SELECTING SEX FOR NON-MEDICAL REASONS USING PREIMPLANTATION GENETIC DIAGNOSIS.

In this article, we consider the prohibition on the use of preimplantation genetic diagnosis to select an embryo on the basis of its sex for non -: medical reasons. We use this as a case study to explore the role that public consultations have and should play in ethico-legal decision-making. Until the Human Fertilisation and Embryology Act 1990 was amended by the Human Fertilisation and Embryology Act 2008, non-medical sex selection of an embryo was not statutorily regulated, but it was the policy of the Human Fertilisation and Embryology Authority that such selection should not occur. However, since 2009, it has been a criminal offence to select an embryo on the basis of its sex for non-medical reasons. We consider the reasons given for this change and explore the role that 'public opinion' had in the decision-making process. On the face of it, asking the public what they think seems reasonable, fair and democratic, and those who are not in favour of public consultations being accorded great weight in matters of policy may appear out of touch and as wanting to impose their moral views on the public at large. But there are problems with doing so, especially when seeking to regulate ethically controversial issues. We discuss whether regulation should be influenced by public opinion obtained via 'public consultations', and utilise sex selection for non-medical reasons as an example of how (apparently) public opinion was used to support the criminalisation of this practice.

THINK OF THE CHILDREN: SEX SELECTION AND CHILD WELFARE.

This column considers the phenomenon of social sex selection and whether its legal prohibition can be justified in Australasia. It looks at whether the liberal autonomy framework is an adequate ethical basis for assessing sex selection and whether sex selection may raise ethical concerns about the nature of parenting and the welfare .of future children in the Australasian context. It argues that with sex selection comes the implicit instrumentalisation and commodification of children, which both stem from and encourage attitudes contrary to those underpinning the virtues required of parents. It concludes that in lieu of robust arguments in favour of sex selection and in light of the probable (or at least plausible) negative impact on the nature of parenting and the welfare of future children, the legal prohibition on social sex selection should be maintained in Australasia.

Use of reproductive technology for sex selection for nonmedical reasons.

Because these practices are ethically controversial, clinics are encouraged to develop and make available their policies on the provision of nonmedical sex selection, and to accommodate their employees' decisions about whether or not to participate in such treatment. Practitioners offering assisted reproductive services are under no ethical obligation to provide or refuse to provide nonmedically indicated methods of sex selection. This document replaces two documents previously published by the ASRM Ethics Committee, titled, "Sex selection and preimplantation genetic diagnosis" (Fertil Steril 2004;82:S245-8) and "Preconception gender selection for nonmedical reasons" (Fertil Steril 2004;82:S232-5).

Media debates and 'ethical publicity' on social sex selection through preimplantation genetic diagnosis (PGD) technology in Australia.

This paper offers a critical discourse analysis of media debate over social sex selection in the Australian media from 2008 to 2014. This period coincides with a review of the National Health and Medical Research Council's Ethical Guidelines on the Use of Assisted Reproductive Technology in Clinical Practice and Research (2007), which underlie the regulation of assisted reproductive clinics and practice in Australia. I examine the discussion of the ethics of pre-implatation genetic diagnosis (PGD) within the media as 'ethical publicity' to the lay public. Sex selection through PGD is both exemplary of and interconnected with a range of debates in Australia about the legitimacy of certain reproductive choices and the extent to which procreative liberties should be restricted. Major themes emerging from media reports on PGD sex selection in Australia are described. These include: the spectre of science out of control; ramifications for the contestation over the public funding of abortion in Australia; private choices versus public authorities regulating reproduction; and the ethics of travelling overseas for the technology. It is concluded that within Australia, the issue of PGD sex selection is framed in terms of questions of individual freedom against the principle of sex discrimination - a principle enshrined in legislation - and a commitment to publically-funded medical care.