Biomedical research is increasingly carried out in low- and middle-income countries. International consensus has largely been achieved around the importance of valid consent and protecting research participants from harm. But what are the responsibilities of researchers and funders to share the benefits of their research with research participants and their communities? After setting out the legal, ethical and conceptual frameworks for benefit sharing, this collection analyses seven historical cases to identify the ethical and policy challenges that arise in relation to (...) benefit sharing. A series of recommendations address possible ways forward to achieve justice for research participants in low- and middle-income countries. (shrink)

A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

Accessing BRCA1/2 data facilitates the detection of disease-associated variants, which is critical to informing clinical management of risks. BRCA1/2 data sharing is complex and many practices exist. We describe current BRCA1/2 data-sharing practices, in the United States and globally, and discuss obstacles and incentives to sharing, based on 28 interviews with personnel at U.S. and non-U.S. clinical laboratories and databases. Our examination of the BRCA1/2 data-sharing landscape demonstrates strong support for and robust sharing of BRCA1/2 data around the world, increasing (...) global accesses to diverse data sets. (shrink)

This is the first book published that specifically examines questions of ethics and advocacy that arise in conducting research on homelessness, exploring the issues through the deeply personal experiences of some of the field’s leading scholars. By examining the central queries from a broad range of perspectives, the authors presented here draw upon years of rich investigations to generate a framework that will be instructive for researchers across a wide spectrum of areas of inquiry.

This open access book provides original, up-to-date case studies of “ethics dumping” that were largely facilitated by loopholes in the ethics governance of low and middle-income countries. It is instructive even to experienced researchers since it provides a voice to vulnerable populations from the fore mentioned countries. Ensuring the ethical conduct of North-South collaborations in research is a process fraught with difficulties. The background conditions under which such collaborations take place include extreme differentials in available income and power, as well (...) as a past history of colonialism, while differences in culture can add a new layer of complications. In this context, up-to-date case studies of unethical conduct are essential for research ethics training. (shrink)

There is a long history of women being underrepresented in biomedical and health research. Specific women’s health needs have been, and in some cases still are, comparatively neglected areas of study. Concerns about the health and social impacts of such bias and exclusion have resulted in inclusion policies from governments, research funders, and the scientific establishment since the 1990s. Contemporary understandings of foregrounding sex and gender issues within biomedical research range from women’s rights to inclusion, to links between human rights, (...) women’s health and sustainable development, and the increasing scientific and funding expectation for studies to consider the sex and gender implications of research design, results and impact. However, there are also exploitation issues to consider when foregrounding the inclusion of women as research participants, especially for research ethics committees and institutional review boards. A hidden risk is that exploitative research designs and practices may be missed, particularly by reviewers who may not have a nuanced understanding of gender-based harm. Utilizing contemporary case studies of ethics dumping, this paper highlights some of the concerns, and makes recommendations for IRBs/research ethics reviewers to help ensure that essential research is undertaken to the highest ethical standards. (shrink)

Individualism: The Cultural Logic of Modernity is an edited collection of sixteen essays on the idea of the modern sovereign individual in the western cultural tradition. Reconsidering the eighteenth-century realist novel, twentieth-century modernism, and underappreciated topics on individualism and literature, this volume provocatively revises and enriches our understanding of individualism as the generative premise of modernity itself.

Achieving equity in international research is a pressing concern. Exploitation in any scenario, whether of human research participants, institutions, local communities, animals or the environment, raises the overarching question of how to avoid such exploitation. Agreed principles can be universally applied to research in any discipline or geographical area, whatever methodologies are employed. This chapter introduces a collection of case studies, presenting a range of up-to-date examples of exploitation in North-South research collaborations, in order to raise awareness of ethics dumping.

Achieving equity in international research is one of the pressing concerns of the twenty-first century. In this era of progressive globalization, there are many opportunities for the deliberate or accidental export of unethical research practices from high-income regions to low- and middle-income countries and emerging economies. The export of unethical practices, termed “ethics dumping,” may occur through all forms of research and can affect individuals, communities, countries, animals, and the environment. Ethics dumping may be the result of purposeful exploitation but (...) often arises from lack of awareness of good ethical and governance practice. This chapter describes the work of the TRUST project toward counteracting the practice of ethics dumping through the development of tools for the improvement of research governance structures. Multi-stakeholder consultation informs all of TRUST’s developments. Most importantly, this gives voice to marginalized vulnerable groups and indigenous people, who have been equal and active partners throughout the project. At the heart of the TRUST project is an ambitious aim to develop a Global Code of Conduct for Research in Resource-Poor Settings. Uniquely, the Code provides guidance across all research disciplines in clear, short statements, focusing on research collaborations that entail considerable imbalances of power, resources and knowledge and using a new framework based on the values of fairness, respect, care, and honesty. The code was recently adopted by the European Commission as a reference document for Horizon 2020 and Horizon Europe. (shrink)

There is general agreement among ecofeminists regarding the desirability of a variety of expressions of ecofeminism, but this pluralism is under threat with the emergence of an approach that emphasizes the primacy of a philosophical ecofeminism which claims the authority to prescribe what ecofeminism should be. The recent anthology Ecological Feminism is symptomatic of this trend, with contributors who affirm the philosophical significance of ecological feminism by privileging philosophers’ voices over those of other ecofeminists, rather than by engaging in critical (...) dialogue with, and exploring connections between, different ecofeminist discourses. This colonizing strategy actively excludes many women’s voices from the creation of an environmental ethic, including those of activist, spiritual, and “Third World” ecofeminists, but fails to offer any adequate philosophical grounds for doing so. (shrink)

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Mentoring Away the Glass Ceiling in Academia: A Cultured Critique describes how women of diverse backgrounds perceive their mentoring experiences or the lack of mentoring experiences in the academy. This book provides a space for envisioning strategies and practices to improve mentoring practices and the collegiate environment.

Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources—a “cancer gene variant commons”—incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder (...) groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers. (shrink)

Ethics dumping is the practice of undertaking research in a low- or middle-income setting which would not be permitted, or would be severely restricted, in a high-income setting. Whilst Kenya operates a sophisticated research governance system, resource constraints and the relatively low number of accredited research ethics committees limit the capacity for ensuring ethical compliance. As a result, Kenya has been experiencing cases of ethics dumping. This article presents 11 challenges in the context of preventing ethics dumping in Kenya, namely (...) variations in governance standards, resistance to double ethics review, resource constraints, unresolved issues in the management of biological samples, unresolved issues in the management of primary data, unsuitable informed consent procedures, cultural insensitivity, differing standards of care, reluctance to provide feedback to research communities, power differentials which facilitate the exploitation of local researchers and lack of local relevance and/or affordability of the resultant products. A reflective approach for researchers, built around the values of fairness, respect, care and honesty, is presented as a means of taking shared responsibility for preventing ethics dumping. (shrink)

Volume 19, Issue 2, July - August 2020, Page 163-164.

Volume 18, Issue 2, July 2019, Page 73-74.

Volume 18, Issue 2, July 2019, Page 164-164.

Background Maternal mental health during the peripartum period is critically important to the wellbeing of mothers and their infants. Numerous studies and clinical trials have focused on various aspects of interventions and treatments for perinatal mental health from the perspective of researchers and medical health professionals. However, less is known about women’s experiences of participating in perinatal mental health research, and the ethical issues that arise. Aim To systematically review the literature on the ethical issues that emerge from pregnant and/or (...) postpartum women’s experiences of taking part in perinatal mental health-related research. Methods Systematic review of nine bibliographic databases, from inception to July 2021. Qualitative, quantitative and mixed method studies were included if they reported on ethical issues experienced by perinatal women. Research ethical issues encompassed any issue relating to women’s experiences of being offered study information, recruitment, consent, retention and respect for autonomy. Titles, abstracts and full text screening, appraisal of the methodological quality of included studies, and data extraction, were conducted independently by two reviewers. Ethical considerations Ethical approval was not required for this systematic review. Findings A total of 9830 unique citations was retrieved. Six studies met the inclusion criteria. Studies were clinically and methodologically heterogenous, and only one was purposively designed to explore women’s experiences. The key finding was the establishment of trust between the researcher and participant in all stages of the research process. Findings are presented according to recruitment and consent processes, participation and retention, and study follow-up and completion. Conclusion The establishment of trust between the researcher and perinatal women leads to a dynamic with research ethical implications relevant to all stages of perinatal mental health-related research. Further research on the research ethical issues experienced by perinatal women is required because of the limited literature. (shrink)

Explores the moral dimensions of the current global role of the U.S. military.

Michael Cook's classic study, Commanding Right and Forbidding Wrong in Islamic Thought (Cambridge, 2001), reflected upon the Islamic injunction to forbid wrongdoing. This book is a short, accessible survey of the same material. Using Islamic history to illustrate his argument, Cook unravels the complexities of the subject by demonstrating how the past informs the present. At the book's core is an important message about the values of Islamic traditions and their relevance in the modern world.

For liberal contractarians, moral and political principles are justified if agreeable to persons as free and equals. But for critics of liberal contractarianism, this justification applies only to those capable of agreement. Understanding why contractarianism suffers from the problem of exclusion helps up understand the distinctive character of contractarianism and the importance of agreement in particular. I suggest contractarianism need not be objectionably exclusive. I first consider why agreement is important in contractarianism, and then introduce the main versions of contemporary (...) contractarianism and their different understandings of agreement. I discuss how agreement results in exclusion in each, and distinguish two kinds of response to the problem of exclusion: differential inclusion and permissive inclusion. Differential inclusion is unsuccessful because it offers those not fully capable of agreement unequal status. Permissive inclusion may either make the circumstances of agreement more open, or characterize the capacities required for inclusion more permissively. I advocate the latter as the most promising response to the problem of exclusion. I outline a more inclusive contractualism based on the capacity to share goals. (shrink)

This book is the most comprehensive and rigourous critique of the ways disciplinary boundaries still inhibit knowledge-production and integration.

Hospital ethics committees have evolved as a response to complicated legal, ethical, and social dilemmas that accompany modern medicine. In the United States, their growth has been augmented by Joint Commission for the Accreditation of Healthcare Organizations standards and the Patient Self-Determination Act. There appears to be an implicit presumption that all clinical ethics consultation practices are relatively similar. Finally, there is heightened awareness of the needs for quality standards and assessment of the outcomes of ethics consultations.

In this paper I examine the prospects for a successful neo–logicist reconstruction of the real numbers, focusing on Bob Hale's use of a cut-abstraction principle. There is a serious problem plaguing Hale's project. Natural generalizations of this principle imply that there are far more objects than one would expect from a position that stresses its epistemological conservativeness. In other words, the sort of abstraction needed to obtain a theory of the reals is rampantly inflationary. I also indicate briefly why this (...) problem is likely to reappear in any neo–logicist reconstruction of real analysis. (shrink)

This educators’ introduction to semiotics describes a communications phenomenon that has permeated and influenced learner attitudes, behaviors and cognition in any learning environment but especially formal mediated learning environments. Relevant semiotic theory is meaningfully integrated into each chapter.

In empirical modeling, mathematics has an important utility in transforming descriptive representations of target system into calculation devices, thus creating useful scientific models. The transformation may be considered as the action of tools. In this paper, I assume that model idealizations could be such tools. I then examine whether these idealizations have characteristic properties of tools, i.e., whether they are being adapted to the objects to which they are applied, and whether they are to some extent generic.

Explores the moral dimensions of the current global role of the U.S. military.

The Yablo Paradox The Yablo Paradox implies there is no way to coherently assign a truth value to any of the sentences in the countably infinite sequence of sentences, each of the form, “All of the subsequent sentences are false.” Specifically, the Yablo Paradox arises when we consider the following infinite sequence of sentences: The … Continue reading Yablo Paradox →.

Julie Houts has cultivated a devoted following as "Instagram's favourite illustrator" (Vogue) by lampooning the conflicting messages and images women consume and share with the world every day. A collection of darkly comic illustrated essays, Literally Me chronicles the daily exploits of "slightly antisocial heroines" (Refinery29) in vivid, excruciatingly funny detail, including: -The beauty routine of a deranged bride who aspires to be "truly without flaws" on her wedding day -What happens when Kylie Jenner has an existential crisis and (...) can no longer "step out" -A journey to Coachella by the Four Horsewomen of the Apocalypse -The true dating confessions of a fembot -The terrifying description for Alice Staunch's book How to be the Perfect Feminist -The diary of Fiddle Ficus, a tree that lives inside a CÉLINE store, and much more. Literally Me marks the launch of a brilliant new social satirist. Julie's singular voice and beautiful illustrations reveal the truth about the absurdity of life in the social media age: the line between becoming a total `Girlboss' and a 21st-century American Psycho is razor-thin."--Dust jacket. (shrink)

There is a deep cultural anxiety around public expressions of maternalism and the application of maternal values to society as a whole. Julie Stephens examines why postmaternal thinking has become so influential in recent decades and why there has been a growing unease with maternal forms of subjectivity and maternalist perspectives. In moving beyond policy definitions, which emphasize the priority given to women's claims as employees over their political claims as mothers, Stephens details an elaborate process of cultural forgetting (...) that has accompanied this repudiation of the maternal. Reclaiming an alternative feminist position through an investigation of oral history, life narratives, Web blogs, and other rich and varied sources, Stephens confronts the core claims of postmaternal thought and challenges dominant representations of feminism as having forgotten motherhood. Deploying the interpretive framework of memory studies, she examines the political structures of forgetting surrounding the maternal and the weakening of nurture and care in the public domain. She views the promotion of an illusory, self-sufficient individualism as a form of social unmothering that is profoundly connected to this ethos. In rejecting both traditional maternalism and the new postmaternalism, Stephens challenges prevailing paradigms and makes way for an alternative feminist maternalism centering on a politics of care. (shrink)

For Martin, the right to free higher education may be claimed only by those ready and willing pursue autonomy supporting higher education. The unready and unwilling, among whom may be counted carers, disabled, and devout, are excluded. This is unjust. I argue that this injustice follows from a tension between three elements of Martin’s argument: (1) a universal right to autonomy supporting higher education; (2) qualifications on entitlements to access this right in order to preserve the value of higher educational (...) goods; (3) luck egalitarian motivations in Martin’s distributive ethics. I consider options for avoiding such injustices and their implications for Martin’s argument. (shrink)