In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people—in particular those who are resource-poor, located outside of (...) traditional networks of healthcare services, or members of minorities and marginalised groups. In view of growing public investments in participatory research endeavours, we argue that it should be considered more explicitly if, and how, citizen science could help make research more inclusive, contribute to the public good, and possibly even lead to better and more equitable healthcare. Reflecting on emerging ethical concerns for scientific conduct and best medical practice, we propose a set of relevant considerations for researchers, practitioners, bioethicists, funders and participants who seek to advance ethical practices of citizen-led health initiatives, and address profound differences in position, privilege and power in research. (shrink)

BackgroundBioethics can play an important role in addressing diversity both in and outside of academia, setting precedents for meaningful contributions to public discourse, research, teaching, training, and policy development. However, in order to do so, these conversations also need to reflect on the issue of diversity within the field of bioethics across the globe. This study aims to examine current gender representation and diversity at medical ethics and humanities institutes in Germany, the German-speaking areas of Switzerland, and Austria.MethodsA total of (...) forty-nine medical ethics and humanities institutes from Germany (n=42), the German-speaking areas of Switzerland (n=5), and Austria (n=2) were included in the study. Institutes websites were reviewed in the first week of March 2021 and the details of each staff member listed on the website recorded.ResultsOverall, a total of 964 staff members were identified at the forty-nine German-speaking medical ethics and humanities institutes. Just over half (530/964; 55%) of all staff were female. There were significant differences between gender in some staff positions: 64.6 per cent (31/48) of directors were male (χ2(1)=4.1, P=.04); 62.7 per cent (84/134) of student assistants were female (χ2(1)=8.6, P=.003); and 83.7 per cent (77/92) of administrative staff were female (χ2(1)=41.8, P<.001). There were no significant differences between staff gender for researchers and lecturers, or associated researchers. In addition, 65.5 per cent (19/29) of researchers and lecturers who had a professor title were male, but the difference between genders was not found to be significant. However, significantly more of the researchers and lecturers who had completed a habilitation were male (75.8% (25/33); χ2(1)=8.8, P=.003). When comparing the institute director’s gender presentation with staff gender presentation, it was found that male-led institutes had 53.4 per cent (286/536) female staff overall but had 52.7 per cent (136/258) male researchers and lecturers. However, the difference between genders were not found to be significant. On the other hand, female-led institutes had significantly more female staff overall (59.9% (223/372); χ2(1)=14.7, P<.001) and also significantly more female researchers and lecturers (58.9% (119/202; χ2(1)=6.4, P=.01).ConclusionsThere has been a significant push to address gender diversity in German-speaking academia, and this study finds overall good gender parity in medical ethics and humanities institutes. However, there has not been a similar openness to discussing issues of systemic racism or how other forms of inequality affect academic diversity. Taking diversity seriously requires opening up conversations around intersectionality, including difficult conversations around race and cultural background that have long been taboo in German-speaking countries. (shrink)

In mental health ethics, it is generally assumed that coercive measures are sometimes justified when persons with mental illness endanger themselves or others. Coercive measures are regarded as ethically justified only when certain criteria are fulfilled: for example, the intervention must be proportional in relation to the potential harm. In this paper, we demonstrate shortcomings of this established ethical framework in cases where people with mental illness experience structural racism. By drawing on a case example from mental healthcare, we first (...) demonstrate that biases in assessing whether the coercive intervention is proportional are likely, for example, due to an overestimation of dangerousness. We then show that even if proportionality is assessed correctly, and the specific coercive intervention would thus be regarded as ethically justified according to the standard framework, coercion may still be ethically problematic. This is because the standard framework does not consider how situations in which coercive measures are applied arise. If structural racism causally contributes to such situations, the use of coercion can compound the prior injustice of racist discrimination. We conclude that the ethical analysis of coercion in mental healthcare should consider the possibility of discriminatory biases and practices and systematically take the influence of structural discrimination into account. (shrink)

This paper discusses the ethical implications of racism and some of the various costs associated with racism occurring at the institutional level. We argue that, in many ways, the laws, social structures, and institutions in Western society have operated to perpetuate the continuation of historical legacies of racial inequities with or without the intention of individuals and groups in society. By merely maintaining existing structures, laws, and social norms, society can impose social, economic, and health costs on racial minorities that (...) impinge on their well-being and human dignity. Based on a review of multidisciplinary research on racism, particularly focusing on healthcare, we demonstrate how institutional racism leads to social and economic inequalities in society. By positing institutional racism as the inherent cause of avoidable disparities in healthcare, this paper draws attention to the ethical significance of racism, which remains a relatively neglected issue in bioethics research. (shrink)

Hastings Center Report, Volume 52, Issue S1, Page S3-S11, March‐April 2022.

The objective of this article is to shed light on some challenging questions regarding public health and medical ethics that the Turkish healthcare system has recently been forced to confront. In recent years, terrorists in eastern Turkey have launched increasingly destructive attacks, including numerous attempts to undermine the social order by targeting not only government agencies but also the healthcare system. In this study, 54 terrorist incidents specifically targeting the Turkish healthcare system and healthcare professionals were analyzed and divided into (...) 6 categories according to the type of attack. Each category was evaluated in terms of the relevant ethical issues, with regard to both public health and medical ethics. This study shows that terrorist activity may lead to numerous breaches of public health and clinical ethics rules. Therefore, healthcare policy must involve special precautions to minimize breaches of public health and medical ethics in the face of terrorist attacks. (shrink)