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)

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)

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)

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)

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)

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)

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)

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.

Many philosophers hypothesize that our concept of personal identity is partly constituted by the one-person-one-place rule, which states that a person can only be in one place at a time. This hypothesis has been assumed by the most influential contemporary work on personal identity. In this paper, we report a series of studies testing whether the hypothesis is true. In these studies, people consistently judged that the same person existed in two different places at the same time. This result undermines (...) some widely held philosophical assumptions, supports others, and fits well with recent discoveries on identity judgments about inanimate objects and non-human animals. (shrink)

[This] is a... guide to both the major schools of literature and the political, philosophical and cultural theories informing them from the nineteenth century to the present. It covers the fundamental basics of each theory alongside discussions of current debates and contemporary usage..."--Back cover.

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.

_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)

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

This study examines whether L1 English/L2 Spanish learners at different proficiency levels acquire a novel L2 phoneme, the Spanish palatal nasal /ɲ/. While alveolar /n/ is part of the Spanish and English inventories, /ɲ/, which consists of a tautosyllabic palatal nasal+glide element, is not. This crosslinguistic disparity presents potential difficulty for L1 English speakers due to L1 segmental and phonotactic constraints; the closest English approximation is the heterosyllabic sequence /nj/. With these crosslinguistic differences in mind, we ask: Do L1 English (...) learners of L2 Spanish produce acoustically distinct Spanish /n/ and /ɲ/ and Does the distinction of /n/ and /ɲ/ vary by proficiency? In the case that learners distinguish /n/ and /ɲ/, the second question investigates the acoustic quality of /ɲ/ to determine if learners' L2 representation patterns with that of an L1 Spanish representation or if learners rely on an L1 representation and if the acoustic quality of L2 Spanish /ɲ/ varies as a function of proficiency. Beginner and advanced L1 English/L2 Spanish speakers and a comparison group of 10 L1 Spanish/L2 English speakers completed delayed repetition tasks in which disyllabic nonce words were produced in a carrier phrase. English critical items contained an intervocalic heterosyllabic /nj/ sequence ; Spanish critical items consisted of items with either intervocalic onset /ɲ/ or /n/ ['xa.na]. We measured duration and formant contours of the following vocalic portion as acoustic indices of the /n/~/ɲ/ and /ɲ/ ~/nj/ distinctions. Results show that, while L2 Spanish learners produce an acoustically distinct /n/ ~ /ɲ/ contrast even at a low level of proficiency, the beginners produce an intermediate /ɲ/ that falls acoustically between their English /nj/ and the L1 Spanish /ɲ/ while the advanced learners' Spanish /ɲ/ and English /nj/ appear to be in the process of equivalence classification. We discuss these outcomes as they relate to the robustness of L1 phonological constraints in late L2 acquisition coupled with the role of perceptual cues, functional load, and questions of intelligibility. (shrink)

The most popular uniting theme in feminist peace literature grounds women's peace work in mothering. I argue if maternal arguments do not address the variety of relationships different races and classes of mothers have to institutional violence and/or the military, then the resulting peace politics can only draw incomplete conclusions about the relationships between maternal work/thinking and peace. To illustrate this I compare two models of mothering: Sara Ruddick's decription of "maternal practice" and Patricia Hill Collins's account of racial-ethnic (...) women's "motherwork.". (shrink)

The debate on love's reasons ignores unrequited love, which—I argue—can be as genuine and as valuable as reciprocated love. I start by showing that the relationship view of love cannot account for either the reasons or the value of unrequited love. I then present the simple property view, an alternative to the relationship view that is beset with its own problems. In order to solve these problems, I present a more sophisticated version of the property view that integrates ideas from (...) different property theorists in the love literature. However, even this more sophisticated property view falls short in accounting for unrequited love's reasons. In response, I develop a new version of the property view that I call the experiential view. On this view, we love a person not only in virtue of properties shaped by and experienced in a reciprocal loving relationship, but also in virtue of perspectival properties, whose value can be properly assessed also outside of a reciprocal loving relationship. The experiential view is the only view that can account not only for reciprocated love's reasons, but also for unrequited love's reasons. (shrink)

Envy is almost universally condemned. But is its reputation warranted? Sara Protasi argues envy is multifaceted and sometimes even virtuous.

In this paper I present a novel taxonomy of envy, according to which there are four kinds of envy: emulative, inert, aggressive and spiteful envy. An inquiry into the varieties of envy is valuable not only to understand it as a psychological phenomenon, but also to shed light on the nature of its alleged viciousness. The first section introduces the intuition that there is more than one kind of envy, together with the anecdotal and linguistic evidence that supports it. The (...) second section proposes and explains in detail a definition of envy tout court. The third section presents a recurring distinction between behavioral tendencies of envy, which has been explained in two distinct ways, one mostly proposed by psychologists, the other discernible in the philosophical tradition. The fourth section argues that these models of explanation track two variables, whose interplay is responsible for the existence of the four envies. The fifth section illustrates four paradigmatic cases, and provides a detailed analysis of the phenomenology, motivational structure, and typical behavioral outputs of each. The paper ends with a brief discussion of the implications of the taxonomy for moral education. (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)

Structural proof theory is a branch of logic that studies the general structure and properties of logical and mathematical proofs. This book is both a concise introduction to the central results and methods of structural proof theory, and a work of research that will be of interest to specialists. The book is designed to be used by students of philosophy, mathematics and computer science. The book contains a wealth of results on proof-theoretical systems, including extensions of such systems from logic (...) to mathematics, and on the connection between the two main forms of structural proof theory - natural deduction and sequent calculus. The authors emphasize the computational content of logical results. A special feature of the volume is a computerized system for developing proofs interactively, downloadable from the web and regularly updated. (shrink)

The brain networks underlying human multiple-cue judgment, the judgment of a continuous criterion based on multiple cues, have been examined in a few recent studies, and the ventral precuneus has been found to be a key region. Specifically, activation differences in ventral precuneus (as measured with functional magnetic resonance imaging, fMRI) has been linked to an exemplar-based judgment process, where judgments are based on memory for previous similar cases. What aspects of exemplar-based judgment ventral precuneus supports is however poorly understood. (...) Ventral precuneus is a brain region important for various episodic memory processes, where increased engagement of this region together with the ventromedial prefrontal cortex (vmPFC) and the medial temporal lobes (MTL) during learning have been linked to retrieval success. Several alternatives are plausible, for example that reduced brain activity in ventral precuneus during learning to make exemplar-based judgments could reflect reduced needs for visuo-spatial attention as a function of learning to master the task. The present study used fMRI during a multiple-cue judgment task to gain novel neurocognitive evidence informative for the link between learning-related activity changes in ventral precuneus and exemplar-based judgment. Participants (N = 27) spontaneously learned to make judgments during fMRI, in a multiple-cue judgment task specifically designed to induce exemplar-based processing. Contrasting brain activity during late learning to early learning indeed revealed higher activity in ventral precuneus, the bilateral MTL and the vmPFC. Activity in the ventral precuneus and the vmPFC was found to parametrically increase between each judgment event, and activity levels in the ventral precuneus predicted performance after learning. These results are interpreted such that the ventral precuneus supports the aspects of exemplar-based processes that are related to episodic memory, tentatively by building and retrieving memory representations for judgment. (shrink)

First published in 1999. Routledge is an imprint of Taylor & Francis, an informa company.

Sara HeinSmaa rediscovers neglected passages of Le Duexi_me Sexe in her quest to follow Simone de Beauvoir's line of thinking. She finds the masterpiece to be grounded in the work of Husserl and Merleau-Ponty.