Taking Rights Seriously.

Rethinking Informed Consent in Bioethics

1 Centre for Bioethics, Medical College, Xiamen University, Xiamen 361102, China 2 Center for Bioethics, School of Marxism, Southern Medical University, Guangzhou 510515, China 3 Beijing Rexinchang Biotechnology Research Institute Co. Ltd, Beijing, China 4 Institute for Human Microbiome Research, Medical College, Xiamen University, Xiamen 361005, China 5 Department of Digestive Diseases, Zhongshan Hospital affiliated to Xiamen University, Xiamen 361004, China & Correspondence: yhma@xmu.edu.cn (Y. Ma)

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Help, hope and hype: ethical considerations of human microbiome research and applications.

RATIONALE
Most research in mental health and abortion has examined factors associated with post-abortion psychological health. However, research that follows women from before to after their abortion consistently finds that depressive, anxiety, and stress symptoms are highest just before an abortion compared to any time afterwards.


OBJECTIVE
This finding suggests that studies investigating psychosocial factors related to pre-abortion mental health are warranted.


METHODS
The current study uses data from 353 women seeking abortions at three community reproductive health clinics to examine predictors of pre-abortion psychological health. Drawing from three perspectives in the abortion and mental health literature, common risks, stress and coping, and sociocultural context, we conducted multivariable analyses to examine the contribution of important factors on depressive, anxiety, and stress symptoms just before an abortion, including sociodemographics, abortion characteristics, childhood adversities, recent adversities with an intimate partner, relationship context, future pregnancy desires, and perceived abortion stigma.


RESULTS
Childhood and partner adversities, including reproductive coercion, were associated with negative mental health symptoms, as was perceived abortion stigma. Before perceived abortion stigma was entered into the model, 18.6%, 20.7%, and 16.8% of the variance in depressive, anxiety, and stress symptoms respectively, was explained. Perceived abortion stigma explained an additional 13.2%, 9.7%, and 10.7% of the variance in depressive, anxiety, and stress symptoms pre-abortion.


CONCLUSION
This study, one of the first to focus on pre-abortion mental health as an outcome, suggests that addressing stigma among women seeking abortions may significantly lower their psychological distress.

Relationship between psychosocial factors and pre-abortion psychological health: The significance of stigma

https://hal.archives-ouvertes.fr/hal-03313143/document

Reasons for rejecting hormonal contraception in Western countries: A systematic review

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.

https://link.springer.com/content/pdf/10.1007/s41649-017-0012-1.pdf

The Right to Know and the Right Not to Know Revisited: Part One.

This article reviews the Nuffield Council on Bioethics’ report on Non‐Invasive Prenatal Testing (NIPT); and introduces two general questions provoked by the report – concerning, respectively, the nature and extent of the informational interests that are to be recognised in today's ‘information societies’ and the membership of today's ‘genetic societies’. The article also considers the role and nature of the Nuffield Council. While the Council's report identifies a range of individual and collective interests that are relevant to determining the legitimate uses of NIPT, we argue that it should put these interests into an order of importance; we sketch how this might be done; and we suggest that, failing such a prioritisation of interests, the Council should present its reflections in a way that engages public debate around a number of options rather than making firm recommendations.

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Testing times ahead: non-invasive prenatal testing and the kind of community we want to be

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.

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Sterilisations at delivery or after childbirth: Addressing continuing abuses in the consent process.

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.

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The ethics of state-sponsored and clinical promotion of long-acting reversible contraception.

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.

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Jeffrey Wale

Papers

The Right to Know and the Right Not to Know Revisited: Part One.

Testing times ahead: non-invasive prenatal testing and the kind of community we want to be

Sterilisations at delivery or after childbirth: Addressing continuing abuses in the consent process.

The ethics of state-sponsored and clinical promotion of long-acting reversible contraception.

Incentivised sterilisation: lessons from India and for the future