Restricted access to assisted reproductive technology and fertility preservation: legal and ethical issues.

Access to assisted reproductive technology (ART) and fertility preservation remains restricted in middle and low income countries. We sought to review the status of ART and fertility preservation in Brazil, considering social indicators and legislative issues that may hinder the universal access to these services. Although the Brazilian Constitution expressly provides the right to health, and ordinary law ensures the state is obliged to support family planning, access to services related to ART and fertility preservation is neither easy nor egalitarian in Brazil. Only a handful of public hospitals provide free ART, and their capacity far from meets demand. Health insurance does not cover ART, and the cost of private care is unaffordable to most people. Brazilian law supports, but does not command, the state provision of ART and fertility preservation to guarantee the right to family planning; therefore, the availability of state-funded treatments is still scarce, reinforcing social disparities. Economic projections suggest that including ART in the Brazilian health system is affordable and may actually become profitable to the state in the long term, not to mention the ethical imperative of recognizing infertility as a disease, with no reason to be excluded from a health system that claims to be 'universal'.

Impact of population growth and population ethics on climate change mitigation policy.

Future population growth is uncertain and matters for climate policy: higher growth entails more emissions and means more people will be vulnerable to climate-related impacts. We show that how future population is valued importantly determines mitigation decisions. Using the Dynamic Integrated Climate-Economy model, we explore two approaches to valuing population: a discounted version of total utilitarianism (TU), which considers total wellbeing and is standard in social cost of carbon dioxide (SCC) models, and of average utilitarianism (AU), which ignores population size and sums only each time period's discounted average wellbeing. Under both approaches, as population increases the SCC increases, but optimal peak temperature decreases. The effect is larger under TU, because it responds to the fact that a larger population means climate change hurts more people: for example, in 2025, assuming the United Nations (UN)-high rather than UN-low population scenario entails an increase in the SCC of 85% under TU vs. 5% under AU. The difference in the SCC between the two population scenarios under TU is comparable to commonly debated decisions regarding time discounting. Additionally, we estimate the avoided mitigation costs implied by plausible reductions in population growth, finding that large near-term savings ($billions annually) occur under TU; savings under AU emerge in the more distant future. These savings are larger than spending shortfalls for human development policies that may lower fertility. Finally, we show that whether lowering population growth entails overall improvements in wellbeing-rather than merely cost savings-again depends on the ethical approach to valuing population.

Incentivised sterilisation: lessons from India and for the future.

Family planning programmes in India have historically been target-driven and incentive-based with sterilisation seen as a key component of controlling population growth. This opinion paper uses India as the backcloth to examine the ethics of using incentive policy measures to promote and secure sterilisations within communities. Whilst we acknowledge that these measures have some value in reproductive health care, their use raises specific issues and wider concerns where the outcome is likely to be permanent and life changing for the acceptor.

Conscientious objection to abortion, the law and its implementation in Victoria, Australia: perspectives of abortion service providers.

BACKGROUND: In Victoria, Australia, the law regulating abortion was reformed in 2008, and a clause ('Section 8') was introduced requiring doctors with a conscientious objection to abortion to refer women to another provider. This study reports the views of abortion experts on the operation of Section 8 of the Abortion Law Reform Act in Victoria. METHODS: Nineteen semi-structured qualitative interviews were conducted with purposively selected Victorian abortion experts in 2015. Interviews explored the impact of abortion law reform on service provision, including the understanding and implementation of Section 8. Interviews were transcribed verbatim and analysed thematically. RESULTS: The majority of participants described Section 8 as a mechanism to protect women's right to abortion, rather than a mechanism to protect doctors' rights. All agreed that most doctors would not let moral or religious beliefs impact on their patients, and yet all could detail negative experiences related to Section 8. The negative experiences arose because doctors had: directly contravened the law by not referring; attempted to make women feel guilty; attempted to delay women's access; or claimed an objection for reasons other than conscience. Use or misuse of conscientious objection by Government telephone staff, pharmacists, institutions, and political groups was also reported. CONCLUSION: Some doctors are not complying with Section 8, with adverse effects on access to care for some women. Further research is needed to inform strategies for improving compliance with the law in order to facilitate timely access to abortion services.

Ethical dilemmas and legal aspects in contraceptive counselling for women with intellectual disability-Focus group interviews among midwives in Sweden.

BACKGROUND: Few studies have explored ethical and legal issues in contraceptive counselling among women with intellectual disability (ID). This study aimed to gain a deeper understanding of these issues during midwifery contraceptive counselling. METHOD: The present authors interviewed 19 midwives in five focus groups in Sweden 2016 - 2017 and analysed data with content analysis. RESULTS: The participants expressed that women with intellectual disability have equal right to relationships and sexual expressions, but feared exposure to sexual exploitation/abuse. They experienced ethical dilemmas related to principles of fairness and autonomy, but strived to provide assistance in spite of the women's cognitive impairment, presence of supporting persons and uncertainty of optimal counselling. Organizational support was insufficient. CONCLUSIONS: The midwives experienced ambivalence, uncertainty and ethical dilemmas in their counselling. They were, however, aware of legal aspects and strived for the women's best interest, right to self-determination and autonomous choices. The participants wanted better professional teamwork and support.

Regret, shame, and denials of women's voluntary sterilization.

Women face extraordinary difficulty in seeking sterilization as physicians routinely deny them the procedure. Physicians defend such denials by citing the possibility of future regret, a well-studied phenomenon in women's sterilization literature. Regret is, however, a problematic emotion upon which to deny reproductive freedom as regret is neither satisfactorily defined and measured, nor is it centered in analogous cases regarding men's decision to undergo sterilization or the decision of women to undergo fertility treatment. Why then is regret such a concern in the voluntary sterilization of women? I argue that regret is centered in women's voluntary sterilization due to pronatalism or expectations that womanhood means motherhood. Women seeking voluntary sterilization are regarded as a deviant identity that rejects what is taken to be their essential role of motherhood and they are thus seen as vulnerable to regret.

Social Freezing in Medical Practice. Experiences and Attitudes of Gynecologists in Germany.

Surveys of the German public have revealed a high acceptance of social freezing, i.e. oocyte conservation without medical indication. Up to now, there are no investigations available on the experiences and attitudes of health professionals towards social freezing. Between August 2015 and January 2016, we surveyed gynecologists Germany-wide on the topic social freezing. Five gynecologists specialized in reproductive medicine and five office-based gynecologists in standard care were chosen for the survey. The survey was conducted with an explorative, qualitative research design. The demand for social freezing in Germany is low. With regard to their fertility age, most women attend consultations too late, they have only little previous knowledge and false expectations. The gynecologists consider it the duty of society and politics to provide for the compatibility of family and work. They relate late parenthood to disadvantages primarily for the children. A majority of the gynecologists interviewed tend to advise natural reproduction. Social freezing is often mistaken as a kind of fertility insurance. Thus, it is necessary that physicians inform women early about the possibilities and limitations of social freezing. In the first place, social freezing is not a medical or medical-ethical topic. Women consider the method as a possibility to ensure the compatibility of family and work. This compatibility should be mostly perceived as a political topic. It cannot be a medical task to solve this issue. In fact, a debate in society as a whole is necessary that includes all relevant actors.

Patient understanding of genetic information influences reproductive decision making in retinoblastoma.

BACKGROUND: Retinoblastoma is the most common malignant tumour of the eye in childhood, with nearly all bilateral tumours and around 17% to 18% of unilateral tumours due to an oncogenic mutation in the RB1 gene in the germline. Genetic testing enables accurate risk assessment and optimal clinical management for the affected individual, siblings, and future offspring. MATERIAL AND METHODS: We carried out the first UK-wide audit of understanding of genetic testing in individuals with retinoblastoma. A total of 292 individuals aged 16 to 45 years were included. RESULTS: Patients with bilateral disease were significantly more likely to understand the implications of retinoblastoma for siblings and children. There was a significant association between not knowing the results of genetic testing or not understanding the implications and not having children, particularly in women. Surprisingly, this was also true for individuals treated for unilateral disease with a low risk of retinoblastoma for their offspring. CONCLUSION: We are concerned that individuals may be making life choices based on insufficient information regarding risks of retinoblastoma and reproductive options. We suggest that improvement in transition care is needed to enable individuals to make informed reproductive decisions and to ensure optimal care for children born at risk of retinoblastoma.

Understanding low uptake of contraceptives in resource-limited settings: a mixed-methods study in rural Burundi.

BACKGROUND: Family planning can reduce deaths, improve health, and facilitate economic development in resource-limited settings. Yet, modern contraceptive methods are often underused. This mixed-methods study, conducted in rural Burundi, sought to explain low uptake of contraceptives by identifying utilization barriers. Results may inform development of family planning interventions in Burundi and elsewhere. METHODS: We investigated uptake of contraceptives among women of reproductive age in two rural districts of Burundi, using an explanatory sequential, mixed-methods research design. We first assessed availability and utilization rates of modern contraceptives through a facility-based survey in 39 health clinics. Barriers to uptake of contraceptives were then explored through qualitative interviews (N = 10) and focus groups (N = 7). RESULTS: Contraceptives were generally available in the 39 clinics studied, yet uptake of family planning averaged only 2.96%. Greater uptake was positively associated with the number of health professionals engaged and trained in family planning service provision, and with the number of different types of contraceptives available. Four uptake barriers were identified: (1) lack of providers to administer contraception, (2) lack of fit between available and preferred contraceptive methods, (3) a climate of fear surrounding contraceptive use, and (4) provider refusal to offer family planning services. CONCLUSIONS: Where resources are scarce, availability of modern contraceptives alone will likely not ensure uptake. Interventions addressing multiple uptake barriers simultaneously have the greatest chance of success. In rural Burundi, examples are community distribution of contraceptive methods, public information campaigns, improved training for health professionals and community health workers, and strengthening of the health infrastructure.

[Ethical issues of oocyte donation].

The birth and development of oocyte donation technology have brought hope for women with poor ovarian reserve and repeated failure for in vitro fertilization, as well as for those with chromosomal abnormalities, premature ovarian failure, or at perimenopausal or menopausal stages. It has not only preserved their reproductive right, but also stabilized their families and increased social harmony. However, this technology does not only involve infertile couples themselves, but also social and ethical issues concerning their families and the society. This paper has reviewed and discussed the hot issues concerning oocyte donation, e.g., source of eggs, compensation for donors, prerequisites for recipients and donors, privacy of donors, and made suggestions for further improvement for the administration of oocyte donation.

Controversies in faith and health care.

Differences in religious faith-based viewpoints (controversies) on the sanctity of human life, acceptable behaviour, health-care technologies and health-care services contribute to the widespread variations in health care worldwide. Faith-linked controversies include family planning, child protection (especially child marriage, female genital mutilation, and immunisation), stigma and harm reduction, violence against women, sexual and reproductive health and HIV, gender, end-of-life issues, and faith activities including prayer. Buddhism, Christianity, Hinduism, Islam, Judaism, and traditional beliefs have similarities and differences in their viewpoints. Improved understanding by health-care providers of the heterogeneity of viewpoints, both within and between faiths, and their effect on health care is important for clinical medicine, public-health programmes, and health-care policy. Increased appreciation in faith leaders of the effect of their teachings on health care is also crucial. This Series paper outlines some faith-related controversies, describes how they influence health-care provision and uptake, and identifies opportunities for research and increased interaction between faith leaders and health-care providers to improve health care.

Patients' ratings of genetic conditions validate a taxonomy to simplify decisions about preconception carrier screening via genome sequencing.

Advances in genome sequencing and gene discovery have created opportunities to efficiently assess more genetic conditions than ever before. Given the large number of conditions that can be screened, the implementation of expanded carrier screening using genome sequencing will require practical methods of simplifying decisions about the conditions for which patients want to be screened. One method to simplify decision making is to generate a taxonomy based on expert judgment. However, expert perceptions of condition attributes used to classify these conditions may differ from those used by patients. To understand whether expert and patient perceptions differ, we asked women who had received preconception genetic carrier screening in the last 3 years to fill out a survey to rate the attributes (predictability, controllability, visibility, and severity) of several autosomal recessive or X-linked genetic conditions. These conditions were classified into one of five taxonomy categories developed by subject experts (significantly shortened lifespan, serious medical problems, mild medical problems, unpredictable medical outcomes, and adult-onset conditions). A total of 193 women provided 739 usable ratings across 20 conditions. The mean ratings and correlations demonstrated that participants made distinctions across both attributes and categories. Aggregated mean attribute ratings across categories demonstrated logical consistency between the key features of each attribute and category, although participants perceived little difference between the mild and serious categories. This study provides empirical evidence for the validity of our proposed taxonomy, which will simplify patient decisions for results they would like to receive from preconception carrier screening via genome sequencing.

Generating a taxonomy for genetic conditions relevant to reproductive planning.

As genome or exome sequencing (hereafter genome-scale sequencing) becomes more integrated into standard care, carrier testing is an important possible application. Carrier testing using genome-scale sequencing can identify a large number of conditions, but choosing which conditions/genes to evaluate as well as which results to disclose can be complicated. Carrier testing generally occurs in the context of reproductive decision-making and involves patient values in a way that other types of genetic testing may not. The Kaiser Permanente Clinical Sequencing Exploratory Research program is conducting a randomized clinical trial of preconception carrier testing that allows participants to select their preferences for results from among broad descriptive categories rather than selecting individual conditions. This paper describes (1) the criteria developed by the research team, the return of results committee (RORC), and stakeholders for defining the categories; (2) the process of refining the categories based on input from patient focus groups and validation through a patient survey; and (3) how the RORC then assigned specific gene-condition pairs to taxonomy categories being piloted in the trial. The development of four categories (serious, moderate/mild, unpredictable, late onset) for sharing results allows patients to select results based on their values without separately deciding their interest in knowing their carrier status for hundreds of conditions. A fifth category, lifespan limiting, was always shared. The lessons learned may be applicable in other results disclosure situations, such as incidental findings.

Stratified reproduction, family planning care and the double edge of history.

PURPOSE OF REVIEW: There is a growing clinical consensus that Medicaid sterilization consent protections should be revisited because they impede desired care for many women. Here, we consider the broad social and ideological contexts for past sterilization abuses, beyond informed consent. RECENT FINDINGS: Throughout the US history, the fertility and childbearing of poor women and women of color were not valued equally to those of affluent white women. This is evident in a range of practices and policies, including black women's treatment during slavery, removal of Native children to off-reservation boarding schools and coercive sterilizations of poor white women and women of color. Thus, reproductive experiences throughout the US history were stratified. This ideology of stratified reproduction persists today in social welfare programs, drug policy and programs promoting long-acting reversible contraception. SUMMARY: At their core, sterilization abuses reflected an ideology of stratified reproduction, in which some women's fertility was devalued compared to other women's fertility. Revisiting Medicaid sterilization regulations must therefore put issues of race, ethnicity, class, power and resources - not just informed consent - at the center of analyses.

The attitudes of mental health professionals towards patients' desire for children.

BACKGROUND: When a patient with a serious mental illness expresses a desire for children, mental health professionals are faced with an ethical dilemma. To date, little research has been conducted into their strategies for dealing with these issues. METHODS: Seven focus groups with a total of 49 participants from all professional groups active in mental health (nurses, psychologists, social workers and psychiatrists) were conducted in a 330-bed psychiatric hospital. Group discussions were transcribed verbatim and analysed by the documentary method described by Bohnsack. RESULTS: Mental health professionals did not feel that their patients' desire for children was as important in daily practice as were parenting issues. When discussing the desire for children on the part of patients, the following themes emerged: "the patient's own decision", "neutrality", "the patient's well-being", "issues affecting the children of mentally ill parents" and "appropriate parenthood". In order to cope with what they perceived as conflicting norms, mental health professionals developed the following (discursive) strategies: "subordination of child welfare", "de-professionalisation", "giving rational advice" and "resignation". CONCLUSIONS: The theme of "reproductive autonomy" dominated mental health professionals' discourse on the desire for children among psychiatric patients. "Reproductive autonomy" stood in conflict with another important theme (patient's children). Treating reproductive issues as taboo is the result of the gap between MHPs' perceptions of (conflicting) norms when dealing with a patient's desire for children and the limited opportunities to cope with them appropriately.In order to support both patients with a desire for children and mental health professionals who are charged with providing counselling for such patients, there is a need to encourage ethical reflection and to focus on clinical recommendations in this important area.

Micro-blogs, online forums, and the birth-control policy: social media and the politics of reproduction in China.

In June 2012, the news of a Chinese woman's forced late-term abortion quickly spread across the internet in China. Graphic photos of the woman with the aborted fetus provoked public outrage and widespread condemnation on social media sites. In the aftermath, local authorities apologized, seven officials were given demerits, and the couple received monetary compensation. This case was put under the spotlight mainly because of the exposure of the story by family members of the woman through social media and the resulting public outcry in cyberspace. Following the disclosure of this story and public reactions online, this article explores the complex interplays among different layers of state power, the individual, and the public in reproductive politics, and discusses the ways in which social media has been utilized to resist state control of reproduction. By delving into the nuanced interactions among layers of state authorities, this article sheds light on the study of state-society relations in reproductive politics. It also calls attention to the role that social media plays in reproductive issues.

Of paradox and plausibility: the dynamic of change in medical law.

This article develops a model of change in medical law. Drawing on systems theory, it argues that medical law participates in a dynamic of 'deparadoxification' and 'reparadoxification' whereby the underlying contingency of the law is variously concealed through plausible argumentation, or revealed by critical challenge. Medical law is, thus, thoroughly rhetorical. An examination of the development of the law on abortion and on the sterilization of incompetent adults shows that plausibility is achieved through the deployment of substantive common sense and formal stylistic devices. It is undermined where these elements are shown to be arbitrary and constructed. In conclusion, it is argued that the politics of medical law are constituted by this antagonistic process of establishing and challenging provisionally stable normative regimes.

Pregnancy Planning and Genetic Testing: Exploring Advantages, and Challenges.

Pregnancy planning and genetic testing (PPGT) has emerged as a tool in reproductive healthcare, offering parents-to-be insight in their risks of having a child with a genetic disorder. This paper reviews the advantages, drawbacks and challenges associated with PPGT, providing some practical guidance for health care professionals. Advantages include identification of genetic risks, a possibility to informed reproductive decision-making, and the potential to reduce the parents-to-be risk for an affected child. Challenges and drawbacks include provision of service, ethical considerations, genetic counselling complexities, and the need to increase public and professional awareness by comprehensive education and accessibility. Practical guidance involves considerations for selecting appropriate candidates, counselling strategies, and how to integrate PPGT into existing healthcare frameworks. By addressing these factors, PPGT can offer an increased reproductive informed choice for the individual and the couple reducing the burden of disease in the family.