Potential conflicts in midwifery practice regarding conscientious objection to abortions in Scotland

Background: This study was developed as a result of a court case involving conflicts between midwives’ professional practice and their faith when caring for women undergoing abortions in Scotland. Research questions: What are practising Roman Catholics’ perspectives of potential conflicts between midwives’ professional practice in Scotland with regard to involvement in abortions and their faith? How relevant is the ‘conscience clause’ to midwifery practice today? and What are participants’ understandings of Canon 1398 in relation to midwifery practice? Research design: The theoretical underpinning of this study was Gadamer’s hermeneutic out of which the method developed by Fleming et al. involving a five-stage approach was utilised. Participants and research context: The research was conducted in the south of Scotland. A purposive sampling method was used. Eight participants who were practising Roman Catholics familiar with the subject of conscientious objection who were either midwives, lawyers (civil, canon or both) or priests contributed. Ethical considerations: The major ethical issues related to respect for autonomy, maintaining confidentiality and obtaining voluntary informed consent. Parish priests agreed to act as gatekeepers to prospective participants. All legal requirements were addressed regarding data collection and storage. Approval was given by the ethics committee of the university with which one of the researchers were associated. Findings: Three key themes provide an understanding of the situation in which midwives find themselves when considering the care for a woman admitted for an abortion: competing legal systems, competing views of conscience and limits of participation. Conclusion: Clear guidelines for practice should be developed by a multi-professional and consumer group based on an update of the abortion law to reflect the change from a surgical to medical procedure. Clarification of Canon 1398 in relation to what is and is not participation in the procurement of abortion would be of benefit to midwives with a conscientious objection

Conscience and conscientious objection: The midwife's role in abortion services.

Traditionally, the role of midwives has been to be with women throughout the pregnancy continuum, from conception until the end of the postnatal period. Midwives, however, have been named as key providers of abortion services. While freedom of conscience is legally protected within Europe, discrepancies exist between midwifery and conscientious objection to abortion-related services. Midwives are largely ignored within the academic discussion despite the care and support they give to women undergoing abortions. Those discrepancies led to the aim of this article to address this issue by discussing some of the key ethical and legal concepts that are relevant to midwives' role in the provision of abortion services. This article shows that the decision to provide or object to abortion services remains ethically very complex because arguments exist both for and against its provision. Being with women can be interpreted differently and individual situations of care are multifaceted. Conscientious objection to abortion services is a highly contentious issue that has an overall importance to midwives. Noting that decisions are individual, may change or may be situationally dependant; a definitive position of midwives for or against conscientious objection cannot be assumed. Respecting conscience and acknowledging that there are various arguments for and against conscientious objection promotes widespread understanding. It accommodates both the opportunity for midwives to object on conscience grounds to the provision of abortion services and respect women's autonomy so that mutual agreement may be reached on issues that may have far reaching consequences

Recommendations for returning genomic incidental findings? We need to talk!

The American College of Medical Genetics and Genomics recently issued recommendations for reporting incidental findings from clinical whole-genome sequencing and whole-exome sequencing. The recommendations call for evaluating a specific set of genes as part of all whole-genome sequencing/whole-exome sequencing and reporting all pathogenic variants irrespective of patient age. The genes are associated with highly penetrant disorders for which treatment or prevention is available. The effort to generate a list of genes with actionable findings is commendable, but the recommendations raise several concerns. They constitute a call for opportunistic screening, through intentional effort to identify pathogenic variants in specified genes unrelated to the clinical concern that prompted testing. Yet for most of the genes, we lack evidence about the predictive value of testing, genotype penetrance, spectrum of phenotypes, and efficacy of interventions in unselected populations. Furthermore, the recommendations do not allow patients to decline the additional findings, a position inconsistent with established norms. Finally, the recommendation to return adult-onset disease findings when children are tested is inconsistent with current professional consensus, including other policy statements of the American College of Medical Genetics and Genomics. Instead of premature practice recommendations, we call for robust dialogue among stakeholders to define a pathway to normatively sound, evidence-based guidelines

Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US

Individuals participating in biobanks and other large research projects are increasingly asked to provide broad consent for open-ended research use and widespread sharing of their biosamples and data. We assessed willingness to participate in a biobank using different consent and data sharing models, hypothesizing that willingness would be higher under more restrictive scenarios. Perceived benefits, concerns, and information needs were also assessed. In this experimental survey, individuals from 11 US healthcare systems in the Electronic Medical Records and Genomics (eMERGE) Network were randomly allocated to one of three hypothetical scenarios: tiered consent and controlled data sharing; broad consent and controlled data sharing; or broad consent and open data sharing. Of 82,328 eligible individuals, exactly 13,000 (15.8%) completed the survey. Overall, 66% (95% CI: 63%–69%) of population-weighted respondents stated they would be willing to participate in a biobank; willingness and attitudes did not differ between respondents in the three scenarios. Willingness to participate was associated with self-identified white race, higher educational attainment, lower religiosity, perceiving more research benefits, fewer concerns, and fewer information needs. Most (86%, CI: 84%–87%) participants would want to know what would happen if a researcher misused their health information; fewer (51%, CI: 47%–55%) would worry about their privacy. The concern that the use of broad consent and open data sharing could adversely affect participant recruitment is not supported by these findings. Addressing potential participants’ concerns and information needs and building trust and relationships with communities may increase acceptance of broad consent and wide data sharing in biobank research

COVID‐19: Restrictive practices and the law during a global pandemic – an Australian perspective

The COVID-9 pandemic has created a heightened state of anxiety and fear in many communities (Usher, Durkin, & Bhullar, 2020), particularly within vulnerable populations (such as the elderly, people with disability and people with mental illness; prisoners and asylum seekers). These vulnerable populations are already sensitive to the use of restrictive practices, namely, the use of interventions that restrict the rights or freedom of movement of patients via restraint (chemical, mechanical, social or physical) and seclusion. These concerns are exacerbated in a time of pandemic (World Health Organization, 2020). The laws in all Australian jurisdictions require consideration of the principle that the freedom of people in care is restricted as little as possible. It is therefore essential that restrictive practices are undertaken lawfully and with careful consideration (Chandler, White, & Wilmott, 2016). Two recent decisions of tribunals illustrate these concerns (See Box 1)

A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States

Purpose: In 2011, an Advanced Notice of Proposed Rulemaking proposed that de-identified human data and specimens be included in biobanks only if patients provide consent. The National Institutes of Health Genomic Data Sharing policy went into effect in 2015, requiring broad consent from almost all research participants. Genet Med 18 7, 663–671. Methods: We conducted a systematic literature review of attitudes toward biobanking, broad consent, and data sharing. Bibliographic databases included MEDLINE, Web of Science, EthxWeb, and GenETHX. Study screening was conducted using DistillerSR. Genet Med 18 7, 663–671. Results: The final 48 studies included surveys (n = 23), focus groups (n = 8), mixed methods (n = 14), interviews (n = 1), and consent form analyses (n = 2). Study quality was characterized as good (n = 19), fair (n = 27), and poor (n = 2). Although many participants objected, broad consent was often preferred over tiered or study-specific consent, particularly when broad consent was the only option, samples were de-identified, logistics of biobanks were communicated, and privacy was addressed. Willingness for data to be shared was high, but it was lower among individuals from under-represented minorities, individuals with privacy and confidentiality concerns, and when pharmaceutical companies had access to data. Genet Med 18 7, 663–671. Conclusions: Additional research is needed to understand factors affecting willingness to give broad consent for biobank research and data sharing in order to address concerns to enhance acceptability. Genet Med 18 7, 663–671