Jeffrey Wale

This chapter considers the contingent use of prenatal DNA tests for anomaly pregnancy screening and examines the informational and ethical implications of different test variants for pregnant women. The focus is on the recall and reflex test variants. The recall method uses a two-stage screening process, whereby higher risk patients are recalled for the option of stage 2 DNA or invasive testing. The reflex method retains a separate blood sample at stage 1, which is automatically used for DNA testing if the stage 1 markers identify a higher risk case. Here the patient receives an amalgam of the test results from both stages in a single data report. The question is whether these different packaging variants have any implications for the informational interests of pregnant women.

The purpose of this study is an ethical evaluation of the role of transnational philanthropic and commercial actors in the promotion and implementation of fertility control and family planning programmes in developing countries around the world. In particular, we consider the application, extension and association of collective and individualist ethical justifications to these actors. Our aim is to achieve a better understanding of the rights and obligations that different stakeholders might hold in this arena. We use a critical theoretical lens to examine conventional ethical discourse and literature to develop a fresh conceptual understanding of the arguments applicable to philanthropic and commercial actors in the context of fertility control and family planning. Whilst complex multi‐stakeholder arrangements make ethical assessment challenging, caution ought to be exercised in the application and extension of conventional state‐based justifications for fertility control or family planning to these transnational non‐state actors. Collective justifications or interests cannot be automatically extended to cover the activities of these organisations and actors in this context. Potential conflicts of interest and inequalities in the power dynamics between stakeholders are all too apparent. The lack of direct accountability and transparency of action also raises questions about the building of philanthropic partnerships and the appropriate degree of state and international oversight. State and philanthropic/commercial interests are unlikely to be aligned when the transformative goals of the latter promote self‐sufficiency and individualist agendas. This paper contributes to ethical knowledge of and literacy in philanthropic activities in the arena of family planning, sexual and reproductive health and fertility control. It offers guidance for the evaluation of these contributions and the development of global philanthropic partnerships.

Objectives To review ethical aspects of the promotion and provision of long-acting reversible contraception (LARC). Specifically, to examine (1) the tension between informational exchange and the active promotion of LARC methods to new and existing contraceptive users by healthcare professionals; and (2) the distinct ethical issues arising from the promotion of LARC methods by state-sponsored actors and healthcare professionals. Methods Narrative review and ethical analysis. Findings There is an ethical difference between raising awareness/informational provision and actively promoting or prioritising specific contraceptive methods. It matters whether the policy choice is made, or the promotional activity about contraception is undertaken, by individual healthcare professionals at a local level or by more remote state-sponsored actors, because the relationship between the promoter and the (potential) contraceptive user is of a different kind. Imposing a dual responsibility upon healthcare professionals for raising awareness/informational exchange and the active promotion of LARC creates an unnecessary tension and barrier for the delivery of patient-centred care. Conclusions This review highlights the need for ethical reflection on the central role of the promoting agent and the distinction between facilitating informational awareness and active promotion of LARC. LARC methods should not be prioritised in isolation and without regard to the wider implications of public promotion. A balanced narrative and information-sharing programme that respects the individual interests of each contraceptive user is called for, especially in direct professional/service user relationships. No assumption should be made that user decision-making will necessarily be determined and influenced solely by the relative effectiveness of the contraceptive method.

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.

Non-consensual sterilisation is not only a historic abuse. Cases of unethical treatment of women around the time of a pregnancy continue in the Twenty-First Century in five continents. Sterilisation is being carried out by some healthcare professionals at the time of delivery, or soon afterwards, without valid consent. A range of contemporary examples of such practices is given. Respecting women’s autonomy should be the touchstone of the consent process. Avoidance of force, duress, deception and manipulation should go without saying. Ethnic minority communities and women living with HIV, in particular, are being targeted for this kind of abuse. Attempts have been made in various countries and by international professional organisations to introduce clinical guidelines to steer health professionals away from this malpractice. Survivors have sought justice in domestic and international courts. This paper critically assesses the evidence on the practical, ethical and legal issues around the handling of consent for these procedures. Suggestions are made about possible regulatory responses that address abuse, whilst maintaining access for those individuals who freely elect to undergo these procedures.

Prompted by developments in human genetics, a recurrent bioethical question concerns a person’s ‘right to know’ and ‘right not to know’ about genetic information held that is intrinsically related to or linked to them. In this paper, we will revisit the claimed rights in relation to two particular test cases. One concerns the rights of the 500,000 participants in UK Biobank (UKB) whose biosamples, already having been genotyped, will now be exome sequenced, and the other concerns the rights of pregnant women (and their children) who undergo non-invasive prenatal testing (NIPT)—a simple blood test that can reveal genetic information about both a foetus and its mother. This two-part paper is in four principal sections. First, we sketch the relevant features of our two test cases. Secondly, we consider the significance of recent legal jurisprudence in the UK and Singapore. Thirdly, we consider how, the jurisprudence apart, the claimed rights might be grounded. Fourthly, we consider the limits on the rights. We conclude with some short remarks about the kind of genetically aware society that we might want to be and how far there is still an opportunity meaningfully to debate the claimed rights.

If the central purpose of non-invasive prenatal testing (NIPT) is to deliver improved reproductive autonomy – by facilitating enhanced choice between the continuation and termination of pregnancy – any public-funded regime ought to be compatible with the legal grounds for decision-making in this context. It is problematic for a State to facilitate access to information that would or is likely to result in legal dilemmas and conceptual issues for those using these tests. Public-funded testing should not be available for purposes that would be or are likely to be ‘incompatible’ with any framework for lawful abortion. In England and Wales, those incompatible purposes currently include the identification of (1) gender in the absence of other genetic factors and (2) specific abnormality that is unlikely to yield serious disability at birth. Consequently, expansion of the NIPT regime to include these purposes should entail changes in the legal framework for abortion.