It is unclear whether the regulatory distinction between non-identifiable and identifiable information—information used to determine informed consent practices for the use of clinically derived samples for genetic research—is meaningful to patients. The objective of this study was to examine patients' attitudes and preferences regarding use of anonymous and identifiable clinical samples for genetic research. Telephone interviews were conducted with 1,193 patients recruited from general medicine, thoracic surgery, or medical oncology clinics at five United States academic medical centers. Wanting to know (...) about research being done was important to 72% of patients when samples would be anonymous and to 81% of patients when samples would be identifiable. Only 17% wanted to know about the identifiable scenario but not the anonymous scenario. Curiosity-based reasons were the most common among patients who wanted to know about anonymous samples. Of patients wanting to know about either scenario, approximately 57% would require researchers to seek permission, whereas 43% would be satisfied with notification only. Patients were more likely to support permission in the anonymous scenario if they had more education, were Black, less religious, in better health, more private, and less trusting of researchers. The sample, although not representative of the general population, does represent patients at academic medical centers whose clinical samples may be used for genetic research. Few patients expressed preferences consistent with the regulatory distinction between non-identifiable and identifiable information. Data from this study should cause policy-makers to question whether this distinction is useful in relation to research with previously collected clinically derived samples. (shrink)

Whole genome sequencing is quickly becoming more affordable and accessible, with the prospect of personal genome sequencing for under $1,000 now widely said to be in sight. The ethical issues raised by the use of this technology in the research context have received some significant attention, but little has been written on its use in the clinical context, and most of this analysis has been futuristic forecasting. This is problematic, given the speed with which whole genome sequencing technology is likely (...) to be incorporated into clinical care. This paper explores one particular subset of these issues: the implications of adopting this technology in the prenatal context without a good understanding of when and how it is useful. Prenatal whole genome sequencing differs from current prenatal genetic testing practice in a number of ethically relevant ways. Most notably, whole genome sequencing would radically increase the volume and scope of available prenatal genetic data. The wealth of new data could enhance reproductive decision‐making, promoting parents' freedom to make well‐informed reproductive decisions. We argue, however, that there is potential for prenatal whole genome sequencing to alter clinical practice in undesirable ways, especially in the short term. We are concerned that the technology could (1) change the norms and expectations of pregnancy in ways that complicate parental autonomy and informed decision‐making, (2) exacerbate the deleterious role that genetic determinism plays in child rearing, and (3) undermine children's future autonomy by removing the option of not knowing their genetic information without appropriate justification. (shrink)

The timing of this special issue of AJOB probing whether public engagement (PE)1 might help achieve equity in genomics is no coincidence. While many issues discussed by the authors are not entirely...

A case study in the kinds of problems to expect from this increasingly popular marketing tactic.

Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the protection of human (...) subjects cannot be achieved by relying solely on procedural safeguards. There are more nuanced issues related to recruitment and retention of subjects, and to the process of informed consent, that are generated during the interaction between study staff and subjects. It is only through an examination of these relationships that one can more fully define and understand the challenges of protecting subjects in research. (shrink)

Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the protection of human (...) subjects cannot be achieved by relying solely on procedural safeguards. There are more nuanced issues related to recruitment and retention of subjects, and to the process of informed consent, that are generated during the interaction between study staff and subjects. It is only through an examination of these relationships that one can more fully define and understand the challenges of protecting subjects in research. (shrink)

Saunkeah et al. argue convincingly that although respect for Tribal sovereignty is often invoked as a core justification for Tribal research protections, an expanded ethical framework is req...

It is unclear whether the regulatory distinction between non-identifiable and identifiable information—information used to determine informed consent practices for the use of clinically derived samples for genetic research—is meaningful to patients. The objective of this study was to examine patients' attitudes and preferences regarding use of anonymous and identifiable clinical samples for genetic research. Telephone interviews were conducted with 1,193 patients recruited from general medicine, thoracic surgery, or medical oncology clinics at five United States academic medical centers. Wanting to know (...) about research being done was important to 72% of patients when samples would be anonymous and to 81% of patients when samples would be identifiable. Only 17% wanted to know about the identifiable scenario but not the anonymous scenario. Curiosity-based reasons were the most common among patients who wanted to know about anonymous samples. Of patients wanting to know about either scenario, approximately 57% would require researchers to seek permission, whereas 43% would be satisfied with notification only. Patients were more likely to support permission in the anonymous scenario if they had more education, were Black, less religious, in better health, more private, and less trusting of researchers. The sample, although not representative of the general population, does represent patients at academic medical centers whose clinical samples may be used for genetic research. Few patients expressed preferences consistent with the regulatory distinction between non-identifiable and identifiable information. Data from this study should cause policy-makers to question whether this distinction is useful in relation to research with previously collected clinically derived samples. (shrink)

Whole-genome analysis and whole-exome analysis generate many more clinically actionable findings than traditional targeted genetic analysis. These findings may be relevant to research participants themselves as well as for members of their families. Though researchers performing genomic analyses are likely to find medically significant genetic variations for nearly every research participant, what they will find for any given participant is unpredictable. The ubiquity and diversity of these findings complicate questions about disclosing individual genetic test results. We outline an approach for (...) disclosing a select range of genetic results to the relatives of research participants who have died, developed in response to relatives? requests during a pilot study of large-scale medical genetic sequencing. We also argue that studies that disclose individual research results to participants should, at a minimum, passively disclose individual results to deceased participants? relatives. (shrink)

Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the (...) range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and tim.. (shrink)

Hastings Center Report, Volume 52, Issue 1, Page 51-58, January/February 2022.

In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues (...) to grow. The budget of the National Institutes of Health, for example, was $20,298 million in 2001, having more than doubled from a budget of $9,218 million 10 years before. This growing body of research includes increased efforts to use stored medical records as a source of data for health services, epidemiologic, and clinical studies. (shrink)

In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues (...) to grow. The budget of the National Institutes of Health, for example, was $20,298 million in 2001, having more than doubled from a budget of $9,218 million 10 years before. This growing body of research includes increased efforts to use stored medical records as a source of data for health services, epidemiologic, and clinical studies. (shrink)

Research participants' views about investigator financial interests were explored. Reactions ranged from concern to acceptance, indifference, and even encouragement. Although most wanted such information, some said it did not matter, was private, or was burdensome, and other factors were more important to research decisions. Very few said it would affect their research decisions, and many assumed that institutions managed potential conflicts of interest. Although disclosure of investigator financial interest information to research participants is often recommended, its usefulness is limited, especially (...) when participation is desired because of illness. (shrink)

Concerns about the influence of financial interests on research have increased, along with research dollars from pharmaceutical and other for-profit companies. Researchers’ financial ties to industry sponsors of research have also increased. Financial interests in biomedical research could influence research design, conduct, or reporting, and could compromise data integrity, participant safety, or both. Investigators’ financial ties with for-profit companies may influence reported scientific results, and may have compromised research participant safety.Disclosure is one commonly accepted method of managing financial relationships in (...) order to minimize possible threats to scientific objectivity, the safety of research participants, or public trust in the integrity of clinical research. Disclosure is presumed useful to the extent that “it gives those who would be affected, or who are otherwise in a good position to assess the risks, information they need to make their own decision.”. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 54-55, October 2012.

Drawing on work of the past decade, this volume brings together articles from the philosophy, history, and sociology of science, and many other branches of the biological sciences. The volume delves into the latest theoretical controversies as well as burning questions of contemporary social importance. The issues considered include the nature of evolutionary theory, biology and ethics, the challenge from religion, and the social implications of biology today (in particular the Human Genome Project).

A welcome addition to the Routledge Critical Thinkers series, Judith Butler is the first guidebook on this renowned feminist and queer theory scholar, which will help not only students of literary criticism but also students of law, sociology, philosophy, film and cultural studies. Examining Butler's work through a variety of contexts, including the formation of gender performativity, identity and subjecthood, Sarah Salih address Butler's crucial ideas on the gender agenda, the body, pornography, race, gay self-expression and power and psychoanalysis. Concluding (...) with an annotated bibliography, this book will be the ideal starting point for all new to Butler. (shrink)

It is impossible to imagine contemporary critical theory without the work of Michel Foucault. His radical reworkings of the concepts of power, knowledge, discourse and identity have influenced the widest possible range of theories and impacted upon disciplinary fields from literary studies to anthropology. Aimed at students approaching Foucault's texts for the first time, this volume offers: * an examination of Foucault's contexts * a guide to his key ideas * an overview of responses to his work * practical hints (...) on 'using Foucault' * an annotated guide to his most influential works * suggestions for further reading. Challenging not just what we think but how we think, Foucault's work remains the subject of heated debate. Sara Mills' Michel Foucault offers an introduction to both the ideas and the debate, fully equipping student readers for an encounter with this most influential of thinkers. (shrink)

This chapter develops an alternative to the dominant articulation of human existence on the basis of classical phenomenology, arguing that Edmund Husserl's phenomenological inquiries into the structures of embodiment provide a very different and more fruitful starting point for the investigation of sexual difference than the ideas of social gender and biological sex. The ways of classifying sex and gender characteristics mark them out on several different conceptual bases, and thus their categories may not correspond or coincide. Moreover historical and (...) biological inquiries indicate that the dimorphic notion of sex is prescriptive and constructive. Finally the sex/gender paradigm is dominated by the explanatory framework of causes and effects. The phenomenological analysis shows that the causal-functional framework is inadequate for the investigation of the plurality of the bodily existence and sexual difference as a dimension of this existence. In the light of the explication of the concepts of sex and gender, and the phenomenological analysis of embodiment, the sex/gender paradigm cannot offer a basis for a comprehensive philosophy of sexual existence. (shrink)

The Routledge Handbook of Women and Ancient Greek Philosophy is an essential reference source for cutting-edge scholarship on women, gender, and philosophy in Greek antiquity. The volume features original research that crosses disciplines, offering readers an accessible guide to new methods, new sources, and new questions in the study of ancient Greek philosophy and its multiple afterlives. Comprising 40 chapters from a diverse international group of experts, the Handbook considers questions about women and gender in sources from Greek antiquity spanning (...) the period from 7th c. BCE to 2nd c. BCE, and in receptions of Greek antiquity from the Roman Imperial period, through the European Renaissance to the current day. Chapters are organized into five major sections: I. Early Greek antiquity – including Sappho, Presocratic philosophy, Sophists, and Greek tragedy – 700s–400s BCE II. Classical Greek antiquity – including Aeschines, Plato, and Xenophon – 400s–300s BCE III. Late Classical Greek to Hellenistic antiquity – including Cyrenaics, Cynics, the Hippocratic corpus, and Aristotle – 300s–200s BCE IV. Late Greek antiquity to Roman Imperial period – including Pythagorean women, Stoics, Pyrrhonian Skeptics, and late Platonists – 200s BCE to 700s CE V. Later receptions – including Shakespeare, the European Renaissance, Anna Julia Cooper, W.E.B. DuBois, Jane Harrison, Sarah Kofman, and Toni Morrison The Routledge Handbook of Women and Ancient Greek Philosophy is a vital resource for students and scholars in philosophy, Classics, and gender studies who want to gain a deeper understanding of philosophy’s rich past and explore sources and questions beyond the traditional canon. The volume is a valuable resource, as well, for students and scholars from history, humanities, literature, political science, religious studies, rhetorical studies, theatre, and LGBTQ and sexuality studies. (shrink)

Recognition of Hannah Arendt's contribution to the history of western philosophy is long overdue. Arendt was a 'political thinker', but this book highlights the importance of her ontological preoccupations for an understanding of her work.

Feminism is sensational -- On being directed -- Willfulness and feminist subjectivity -- Trying to transform -- Being in question -- Brick walls -- Fragile connections -- Feminist snap -- Lesbian feminism -- Conclusion 1: A killjoy survival kit -- Conclusion 2: A killjoy manifesto.

Introduction: find your way -- Orientations toward objects -- Sexual orientation -- The orient and other others -- Conclusion: disorientation and queer objects.

This dissertation argues that corporate moral responsibility can be an element of functioning corporations and is a choice that society can make. Although many in the lay community would say that of course corporations should attend to moral questions, the philosophy of how this can be rightly said is controversial. Section one (first three chapters) gives an account of the nature of functioning business corporations involving the readily observable facts about a corporation doing business, and a tripartite model of the (...) corporation is presented. The tripartite model consists in 1) the legal entity that owns assets and liabilities, 2) a group of persons contracted to the legal entity and 3) a set of roles and relationships between the corporate associates and the legal entity. Additionally, an account of the main extant theories of the nature of corporations and their inability to account for the readily observable facts of corporations is argued. The conclusion is that the corporation, as a tripartite model, is best served by a theory that designates it as a real entity apart from but dependent on its employees. Chapter three answers the question, ‘What type of real entity is a corporation?’, using John Searle’s theory of social ontology to show that corporations are institutional facts, a social entity. The second part of the thesis argues that corporations have moral dispositions analogous to those held by natural persons and maintains that it is these that allow corporate entities to be capable of moral concern. A constitutive rule is introduced, ‘moral company rule’, that may be used as a guide for society to assess the extent of corporate moral responsibility. An account of the powers and responsibilities corporations would have if the moral company rule was followed is presented. Additionally, the dilemma for society, to insist on corporate moral responsibility or preserve the status quo, is explored. The last chapter recapitulates the argument for corporate moral responsibility to illustrate the two aims of this thesis: first to give a clear understanding of the functioning business corporation as a real entity with a series of moral dispositions, and second to show that society has a choice to insist that these moral dispositions are used in business. (shrink)

Differences That Matter challenges existing ways of theorising the relationship between feminism and postmodernism which ask 'is or should feminism be modern or postmodern?' Sara Ahmed suggests that postmodernism has been allowed to dictate feminist debates and calls instead for feminist theorists to speak (back) to postmodernism, rather than simply speak on (their relationship to) it. Such a 'speaking back' involves a refusal to position postmodernism as a generalisable condition of the world and requires closer readings of what postmodernism (...) is actually 'doing' in a variety of disciplinary contexts. Sara Ahmed hence examines constructions of postmodernism in relation to rights, ethics, subjectivity, authorship, meta-fiction and film. (shrink)

_The Promise of Happiness_ is a provocative cultural critique of the imperative to be happy. It asks what follows when we make our desires and even our own happiness conditional on the happiness of others: “I just want you to be happy”; “I’m happy if you’re happy.” Combining philosophy and feminist cultural studies, Sara Ahmed reveals the affective and moral work performed by the “happiness duty,” the expectation that we will be made happy by taking part in that which (...) is deemed good, and that by being happy ourselves, we will make others happy. Ahmed maintains that happiness is a promise that directs us toward certain life choices and away from others. Happiness is promised to those willing to live their lives in the right way. Ahmed draws on the intellectual history of happiness, from classical accounts of ethics as the good life, through seventeenth-century writings on affect and the passions, eighteenth-century debates on virtue and education, and nineteenth-century utilitarianism. She engages with feminist, antiracist, and queer critics who have shown how happiness is used to justify social oppression, and how challenging oppression causes unhappiness. Reading novels and films including_ Mrs. Dalloway_, _The Well of Loneliness_, _Bend It Like Beckham_, and _Children of Men_, Ahmed considers the plight of the figures who challenge and are challenged by the attribution of happiness to particular objects or social ideals: the feminist killjoy, the unhappy queer, the angry black woman, and the melancholic migrant. Through her readings she raises critical questions about the moral order imposed by the injunction to be happy. (shrink)

The paper suggests that we can usefully approach whiteness through the lens of phenomenology. Whiteness could be described as an ongoing and unfinished history, which orientates bodies in specific directions, affecting how they `take up' space, and what they `can do'. The paper considers how whiteness functions as a habit, even a bad habit, which becomes a background to social action. The paper draws on experiences of inhabiting a white world as a non-white body, and explores how whiteness becomes worldly (...) through the noticeability of the arrival of some bodies more than others. A phenomenology of whiteness helps us to notice institutional habits; it brings what is behind to the surface in a certain way. (shrink)

Mental simulation — such as imagining tilting a glass to figure out the angle at which water would spill — can be a way of coming to know the answer to an internally or externally posed query. Is this form of learning a species of inference or a form of observation? We argue that it is neither: learning through simulation is a genuinely distinct form of learning. On our account, simulation can provide knowledge of the answer to a query even (...) when the basis for that answer is opaque to the learner. Moreover, through repeated simulation, the learner can reduce this opacity, supporting self-training and the acquisition of more accurate models of the world. Simulation is thus an essential part of the story of how creatures like us become effective learners and knowers. (shrink)

As a central part of the regulation of contemporary economies, intellectual property (IP) is central to all aspects of our lives. It matters for the works we create, the brands we identify and the medicines we consume. But if IP is power, what kind of power is it, and what does it do? Building on the work of Michel Foucault, Gordon Hull examines different ways of understanding power in copyright, trademark and patent policy: as law, as promotion of public (...) welfare, and as promotion of neoliberal privatization. He argues that intellectual property policy is moving toward neoliberalism, even as that move is broadly contested in everything from resistance movements to Supreme Court decisions. This work should be read by anyone interested in understanding why the struggle to conceptualize IP matters. (shrink)