Navigating Pandemic Moral Distress at Home and at Work: Frontline Workers' Experiences.

Background: During the COVID-19 pandemic, frontline workers faced a series of challenges balancing family and work responsibilities. These challenges included making decisions about how to reduce COVID-19 exposure to their families while still carrying out their employment duties and caring for their children. We sought to understand how frontline workers made these decisions and how these decisions impacted their experiences.Methods: Between October 2020 and May 2021, we conducted 61 semi-structured interviews in English or Spanish, with individuals who continued to work outside of the home during the pandemic and had children living at home. Interviews were recorded, transcribed verbatim, and analyzed using abductive methods.Results: Frontline workers experienced moral distress, the inability to act in accordance with their values and obligations because of internal or external constraints. Their moral distress was a result of the tensions they felt as workers and parents, which sometimes led them to feel like they had to compromise on either or both responsibilities. Individuals felt morally conflicted because 1) their COVID-19 work exposures presented risk that often jeopardized their family's health; 2) their work hours often conflicted with their increased childcare responsibilities; and 3) they felt a duty to their colleagues, patients/customers, and communities to continue to show-up to work.Conclusions: Our findings point to a need to expand the concept of moral distress to include the perspectives of frontline workers outside of the healthcare professions and the fraught decisions that workers make outside of work that may impact their moral distress. Expanding the concept of moral distress also allows for a justice-based framing that can focus attention on the disparities inherent in much frontline work and can justify programmatic recommendations, like increasing paid childcare opportunities, to alleviate moral distress.

Should germline genome editing be allowed? The effect of treatment characteristics on public acceptability.

STUDY QUESTION: To what extent do characteristics of germline genome editing (GGE) determine whether the general public supports permitting the clinical use of GGE? SUMMARY ANSWER: The risk that GGE would cause congenital abnormalities had the largest effect on support for allowing GGE, followed by effectiveness of GGE, while costs, the type of application (disease or enhancement) and the effect on child well-being had moderate effects. WHAT IS KNOWN ALREADY: Scientific progress on GGE has increased the urgency of resolving whether and when clinical application of GGE may be ethically acceptable. Various expert bodies have suggested that the treatment characteristics will be key in determining whether GGE is acceptable. For example, GGE with substantial risks (e.g. 15% chance of a major congenital abnormality) may be acceptable to prevent a severe disease but not to enhance non-medical characteristics or traits of an otherwise healthy embryo (e.g. eye colour or perhaps in the future more complex traits, such as intelligence). While experts have called for public engagement, it is unclear whether and how much the public acceptability of GGE is affected by the treatment characteristics proposed by experts. STUDY DESIGN, SIZE, DURATION: The vignette-based survey was disseminated in 2018 among 1857 members of the Dutch general public. An online research panel was used to recruit a sample representing the adult Dutch general public. PARTICIPANTS/MATERIALS, SETTING, METHODS: A literature review identified the key treatment characteristics of GGE: the effect on the well-being of the future child, use for disease or enhancement, risks for the future child, effectiveness (here defined as the chance of a live birth, assuming that if the GGE was not successful, the embryo would not be transferred), cost and availability of alternative treatments/procedures to prevent the genetic disease or provide enhancement (i.e. preimplantation genetic testing (PGT)), respectively. For each treatment characteristic, 2-3 levels were defined to realistically represent GGE and its current alternatives, donor gametes and ICSI with PGT. Twelve vignettes were created by fractional factorial design. A multinominal logit model assessed how much each treatment characteristic affected participants' choices. MAIN RESULTS AND THE ROLE OF CHANCE: The 1136 respondents (response rate 61%) were representative of the Dutch adult population in several demographics. Respondents were between 18 and 89 years of age. When no alternative treatment/procedure is available, the risk that GGE would cause (other) congenital abnormalities had the largest effect on whether the Dutch public supported allowing GGE (coefficient = -3.07), followed by effectiveness (coefficient = 2.03). Costs (covered by national insurance, coefficient = -1.14), the type of application (disease or enhancement; coefficient = -1.07), and the effect on child well-being (coefficient = 0.97) had similar effects on whether GGE should be allowed. If an alternative treatment/procedure (e.g. PGT) was available, participants were not categorically opposed to GGE, however, they were strongly opposed to using GGE for enhancement (coefficient = -3.37). The general acceptability of GGE was higher than participants' willingness to personally use it (P < 0.001). When participants considered whether they would personally use GGE, the type of application (disease or enhancement) was more important, whereas effectiveness and costs (covered by national insurance) were less important than when they considered whether GGE should be allowed. Participants who were male, younger and had lower incomes were more likely to allow GGE when no alternative treatment/procedure is available. LIMITATIONS, REASONS FOR CAUTION: Some (e.g. ethnic, religious) minorities were not well represented. To limit complexity, not all characteristics of GGE could be included (e.g. out-of-pocket costs), therefore, the views gathered from the vignettes reflect only the choices presented to the respondents. The non-included characteristics could be connected to and alter the importance of the studied characteristics. This would affect how closely the reported coefficients reflect 'real-life' importance. WIDER IMPLICATIONS OF THE FINDINGS: This study is the first to quantify the substantial impact of GGE's effectiveness, costs (covered by national insurance), and effect on child well-being on whether the public considered GGE acceptable. In general, the participants were strikingly risk-averse, in that they weighed the risks of GGE more heavily than its benefits. Furthermore, although only a single study in one country, the results suggests that-if sufficiently safe and effective-the public may approve of using GGE (presumably combined with PGT) instead of solely PGT to prevent passing on a disease. The reported public views can serve as input for future consideration of the ethics and governance of GGE. STUDY FUNDING/COMPETING INTEREST(S): Young Academy of the Royal Dutch Academy of Sciences (UPS/RB/745), Alliance Grant of the Amsterdam Reproduction and Development Research Institute (2017-170116) and National Institutes of Health Intramural Research Programme. No competing interests. TRIAL REGISTRATION NUMBER: N/A.

"It's Just Another Added Benefit": Women's Experiences with Employment-Based Egg Freezing Programs.

BACKGROUND: In 2014, companies began covering the costs of egg freezing for their employees. The adoption of this benefit was highly contentious. Some argued that it offered women more reproductive autonomy, buying time to succeed in their careers and postpone childbearing. Others suggested this benefit might place inappropriate pressure on women, unduly influencing them to freeze their eggs to prioritize their career over reproduction. Although ethical problems with this benefit have been explored, there has not been research analyzing the perspectives of women working for companies that offer employer-based egg freezing. Furthermore, existing empirical studies often focus on the experiences of egg freezers rather than the young women thinking about, but not yet using, this technology. Methods: Through in-depth semi-structured interviews, we explore the perceptions and attitudes of 25 women employees of companies with employer-based egg freezing. Results: These women describe delaying childbearing for a multitude of reasons, including not having a partner, and the desire to achieve social and career goals. Many women did not know that their employers covered egg freezing before the interview (44%; 11/24), suggesting this benefit is not essential to their career and family-building decisions. While women did not describe pressure to use this technology, they did describe how this benefit would not solve the difficulties of becoming a mother while excelling in their careers. Conclusion: Although women may not feel pressure to freeze their eggs and delay childbearing, they still feel constricted in their reproductive options. While employer programs may offer women the ability to delay childbearing, many saw this delay as postponing problems with work-life balance rather than solving them. We suggest that sociocultural shifts, such as workplace daycare, flexible workplace hours, and acceptability of non-biological parenthood, might allow women to feel more empowered about their reproduction choices.