With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on (...) these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: Address the role of history and experience on trust, engage concerns about potential group harm, address cultural values and communication barriers, and integrate patient values and expectations into oversight and governance structures. (shrink)

Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research for a given disease (...) can depend on the education, financial resources, and social capital available to the patients in a given community. In this article, we utilize three case examples to illustrate ethical challenges at the intersection of rare diseases, advocacy and justice, including how reliance on advocacy in rare disease may drive unintended consequences for equity. We conclude with a discussion of opportunities for diverse stakeholders to begin to address these challenges. (shrink)

Is it time to take a break from feminism? In this pathbreaking book, Janet Halley reassesses the place of feminism in the law and politics of sexuality. She argues that sexuality involves deeply contested and clashing realities and interests, and that feminism helps us understand only some of them. To see crucial dimensions of sexuality that feminism does not reveal--the interests of gays and lesbians to be sure, but also those of men, and of constituencies and values beyond the realm (...) of sex and gender--we might need to take a break from feminism. Halley also invites feminism to abandon its uncritical relationship to its own power. Feminists are, in many areas of social and political life, partners in governance. To govern responsibly, even on behalf of women, Halley urges, feminists should try taking a break from their own presuppositions. Halley offers a genealogy of various feminisms and of gay, queer, and trans theories as they split from each other in the United States during the 1980s and 1990s. All these incommensurate theories, she argues, enrich thinking on the left not despite their break from each other but because of it. She concludes by examining legal cases to show how taking a break from feminism can change your very perceptions of what's at stake in a decision and liberate you to decide it anew. (shrink)

The work of Sankary et al. (2022) provides valuable insights into the experiences of participants exiting brain device research. Empirical bioethics research such as this is critical to understandi...

In this issue, Lynch and colleagues discuss lessons learned from the “Operation Warp Speed” response to the COVID-19 pandemic in the United States—both about what to do and what not to do fo...

The rapid advances in genomics over the last decade have come to fruition amid intense public discussions of justice in medicine and health care. While much emphasis has been placed on increasing diversity in genomics research participation, an overly narrow focus on recruitment eschews recognition of the disparities in health care that will ultimately shape access to the benefits of genomic medicine. In this essay, we suggest that achieving a just genomics, both now and in the future, requires an explicit (...) ELSI of translation—normative and pragmatic scholarship that embraces the interconnectedness of research and clinical care and centers the obligations of researchers, institutions, and funders to mitigate inequities throughout the translational pipeline. We propose core principles to guide an ELSI of translation and to ensure that this work balances the value of the generalizable knowledge that genomics research generates and the value of the individuals and communities who make this research possible. (shrink)

DIVA reader aimed at revitalizing left legal and political critique./div.

In this issue, Morain and Largent (2023) raise a pressing issue arising in the context of embedded research—the nature and extent of investigator duties to patient-participants when the line betwee...

Background Machine learning (ML) is utilized increasingly in health care, and can pose harms to patients, clinicians, health systems, and the public. In response, regulators have proposed an approach that would shift more responsibility to ML developers for mitigating potential harms. To be effective, this approach requires ML developers to recognize, accept, and act on responsibility for mitigating harms. However, little is known regarding the perspectives of developers themselves regarding their obligations to mitigate harms.Methods We conducted 40 semi-structured interviews with (...) developers of ML predictive analytics applications for health care in the United States.Results Participants varied widely in their perspectives on personal responsibility and included examples of both moral engagement and disengagement, albeit in a variety of forms. While most (70%) of participants made a statement indicative of moral engagement, most of these statements reflected an awareness of moral issues, while only a subset of these included additional elements of engagement such as recognizing responsibility, alignment with personal values, addressing conflicts of interests, and opportunities for action. Further, we identified eight distinct categories of moral disengagement reflecting efforts to minimize potential harms or deflect personal responsibility for preventing or mitigating harms.Conclusions These findings suggest possible facilitators and barriers to the development of ethical ML that could act by encouraging moral engagement or discouraging moral disengagement. Regulatory approaches that depend on the ability of ML developers to recognize, accept, and act on responsibility for mitigating harms might have limited success without education and guidance for ML developers about the extent of their responsibilities and how to implement them. (shrink)

This article examines the role of gender in the culture of conjunto music, a Mexican American musical genre. It describes how gender is articulated with factors of ethnicity and class in the context of the conjunto setting and performance. The authors examine the structure of gender relations, socialization, and resistance, and they attempt to identify the effects within patriarchy on the forms of adaptation and power available to women in conjunto settings. Conjunto is an arena in which conventional gender identity (...) and gender inequality are reproduced, reinforced, and contested. (shrink)

In their article, Nelson et al. (2023) raise concerns regarding the “paradox of experience” as it relates to the practice of bioethics. They argue that while experience provides individuals with in...

This article describes the short but remarkable sociopolitical life of the Russian rock group Pussy Riot. The group became famous in 2012 not only for the political content of its performances but for its transgressive performativity: its violation of established public settings and its creation of disturbing anti-authoritarianism images of today’s official Russia. The analysis aims to establish Pussy Riot as part of an avant-garde movement and as a radicalization of the very idea of the avant-garde against the familiarity of (...) the public aspect of everyday life. Public ‘normalcy’ reveals itself to be complicit in that what should be criticized is instead taken for granted, and legitimized. Pussy Riot is a new art avant-garde in terms of both how it relates to activism, social justice, feminism, and art, and to the general public, not only to the art world. (shrink)

The viability of Schelling’s Philosophy of Identity depends on the maintenance and cultivation of a reciprocal relationship between internal and objective reality. To stay on course Schelling assiduously checked the conceptual answers he derived from subjective thought against the objective measurements of contemporary physics. As the physicists of his day came to question the materiality of light, Schelling conceptualized it as the outer limit of what the intelligence is capable of grasping intuitively. At the same time he criticized Hegel for (...) ignoring knowledge altogether and for propagating a philosophy of ignorance. More than a century later Jacques Derrida recognized this characteristic in Hegel, but drew a contrary conclusion. Where Schelling counseled that rational philosophy should alter course and set sail toward a higher empiricism, Derrida insisted that in pushing rationality beyond its limits Hegel had sprung a trap of incomprehension andindeterminacy from which no one would or could henceforward escape.This essay evaluates the competing claims of Schelling and Derrida in light of the revolutionary advances of twentieth-century physics. Is this work indeed bringing forth a new world the mind qua mind cannot conceive or measure and liberating man from a prior constraint, or are the emerging physical directives of four dimensional space-time and a flat universe themselves possible only within the cloture de la representation where Derrida presumes to detain human kind indefinitely? (shrink)

Weaving together a social history of the American beef industry withher ownaccount of growing up in the shadow of her grandfather’s cattle business, Halley juxtaposes the two worlds and creates a link between the meat industry and her own experience of the formation of gender and sexuality through family violence.

Sunnybrook Health Sciences Centre, Toronto and University of Toronto Ross E. G. Upshur * Sunnybrook Health Sciences Centre, Joint Centre for Bioethics University of Toronto, Toronto * Corresponding author: Ross E. G. Upshur, Primary Care Research Unit, Sunnybrook Health Sciences Centre, 2075 Bayview Avenue, #E-349, Toronto, Ontario, Canada M4N 3M5. Tel.: 416-480-4753; Fax: 416-480-4536; Email: ross.upshur{at}sunnybrook.ca ' + u + '@' + d + ' '//--> Abstract Are restrictive measures and duties to care ethically reasonably acceptable to faith-based organizations? This (...) study describes the perceptions of individually interviewed spiritual leaders of the disease control measures used during the recent SARS outbreak in Toronto. Four central themes were identified: the relationship between religious obligation and civic responsibilities; the role of faith-based organizations in supporting public health restrictive measures; the reciprocal obligations of public health and religious communities during restrictions; and justifiable limits to duties to care. We conclude that, within certain constraints, spiritual leaders find restrictive measures ethically reasonable and that spiritual leaders can play an important role during pandemic and epidemic control planning. Public health officials should therefore include them in the early and ongoing deliberations of the criteria and logistics for implementation during public health emergencies. CiteULike Connotea Del.icio.us What's this? (shrink)