Background Dynamic consent has been proposed as a process through which participants and patients can gain more control over how their data and samples, donated for biomedical research, are used, resulting in greater trust in researchers. It is also a way to respond to evolving data protection frameworks and new legislation. Others argue that the broad consent currently used in biobank research is ethically robust. Little empirical research with cohort study participants has been published. This research investigated the participants’ opinions (...) of adding a dynamic consent interface to their existing study. Methods Adult participants in the Extended Cohort for E-health, Environment and DNA longitudinal cohort study who are members of the EXCEED Public and Participant Engagement Group were recruited. Four focus groups were conducted and analysed for thematic content. Discussion topics were derived from a review of the current literature on dynamic consent. Results Participants were in favour of many aspects of a dynamic consent interface, such as being able to update their information, add additional data to their records and choose withdrawal options. They were supportive provided it was simple to use and not intrusive. Participants expressed a markedly high level of trust in the study and its investigators and were unanimously happy with their current participation. No strong support was found for adding a dynamic consent interface to EXCEED. Conclusions Trust in the study researchers was the strongest theme found. Openness and good data security were needed to retain their trust. While happy to discuss dynamic consent, participants were satisfied with the current study arrangements. There were indications that changing the study might unnecessarily disturb their trust. This raised the question of whether there are contexts where dynamic consent is more appropriate than others. This study was limited by the small number of participants who were committed to the study and biased towards it. More research is needed to fully understand the potential impact of adding a dynamic consent interface to an existing cohort study. (shrink)

Conventional wisdom and commonsense morality tend to take the integrity of persons for granted. But for people in systematically unjust societies, self-respect and human dignity may prove to be impossible dreams.Susan Babbitt explores the implications of this insight, arguing that in the face of systemic injustice, individual and social rationality may require the transformation rather than the realization of deep-seated aims, interests, and values. In particular, under such conditions, she argues, the cultivation and ongoing exercise of moral imagination is (...) necessary to discover and defend a more humane social vision. Impossible Dreams is one of those rare books that fruitfully combines discourses that were previously largely separate: feminist and antiracist political theory, analytic ethics and philosophy of mind, and a wide range of non-philosophical literature on the lives of oppressed peoples around the world. It is both an object lesson in reaching across academic barriers and a demonstration of how the best of feminist philosophy can be in conversation with the best of “mainstream” philosophy—as well as affect the lives of real people. (shrink)

While parents have traditionally provided proxy consent for minors to participate in research, this has proven inadequate for adolescents who are mentally and emotionally capable of making their own decisions. Research has proven that even young children, and certainly most adolescents, are developmentally prepared to make such decisions for themselves. The author challenges the assumption that both consent and assent are static concepts, and proposes that a sliding scale of competence be created to ascertain the adolescent's comprehension of the proposed (...) research by shifting the burden of proof to those who believe a particular adolescent is unable to provide informed consent. (shrink)

Public bioethics bodies are used internationally as institutions with the declared aims of facilitating societal debate and providing policy advice in certain areas of scientific inquiry raising questions of values and legitimate science. In the United States, bioethical experts in these institutions use the language of consensus building to justify and define the outcome of the enterprise. However, the implications of public bioethics at science-policy boundaries are underexamined. Political interest in such bodies continues while their influence on societal consensus, public (...) debate, and science policy remains ambiguous. This article presents a theoretical discussion of public bioethics bodies as boundary organizations and examines them in terms of relationship to the moral and cognitive authority of science and other forms of expertise, mechanisms for public participation in controversial science policy, and the deployment of consensus models. The theoretical discussion is examined in the case of the U.S. Human Embryo Research Panel. (shrink)

No one denies that people adapt what they say and how they interpret what is said to them, depending on their interactive partners. What is controversial is when and how they do so. Several psycholinguistics research programs have found what appear to be failures to adapt to partners in the early moments of processing and have used this evidence to argue for modularity in the language processing architecture, claiming that the system cannot take into account a partner’s distinct needs or (...) knowledge early in processing. We review the evidence for both early and delayed partner‐specific adaptations, and we identify some challenges and difficulties with interpreting this evidence. We then discuss new analyses from a previously published referential communication experiment (Metzing & Brennan, 2003) demonstrating that partner‐specific effects need not occur late in processing. In contrast to Pickering and Garrod (2004) and Keysar, Barr, and Horton (1998b), we conclude that there is no good evidence that early processing has to be be “egocentric,”“dumb,” or encapsulated from social knowledge or common ground, but that under some circumstances, such as when one partner has made an attribution about another’s knowledge or needs, processing can be nimble enough to adapt quite early to a perspective different from one’s own. (shrink)

By definitively establishing that racism has broad implications for how the entire field of philosophy is practiced -- and by whom -- this powerful and ...

Traditionally, psychologists have utilized rather large-grain, macro units to clarify and measure cognition. Favored units include psychometric factors (e.g., IQ,verbal ability, quantitative ability) and categories of cognition (e.g., inductive reasoning, inference, mental rotation). In this paper, we tested the hypothesis that specific language concepts can complement psychometric factors and cognitive categories as distinguishable units of human intelligence. We found that productive use of specific language in persuasive essays predicted cognitive ability scores on the Cognitive Abilities Test (CogAT). A simple sum (...) of specific words used (ranging from 0 to 7) correlated with cognitive factors almost as highly as the ability tests intercorrelated. The proposed model speculates that, as semiotic signs, discrete language concepts compose in part the cultural heritage passed on with modification from generation to the next. Moreover, in contrast to other units of analysis, cognitive tools in the form of specific language are teachable in a direct and deliberate manner as one function of education. (shrink)

I offer a novel interdisciplinary approach to understanding the communicative task of listening, which is under-theorised compared to its more conspicuous counterpart, speech. By correlating a Rylean view of mental actions with a virtue ethical framework, I show listeners’ internal activity as a morally relevant feature of how they treat people. The listener employs a policy of responsiveness in managing the extent to which they allow a speaker's voice to be centred within their more effortful, engaged attention. A just listener's (...) policy of responsiveness avoids unwarrantedly dismissing speakers’ messages on the basis of peripheral attention alone. (shrink)

Where research was once strictly confined to one laboratory or office, investigators now widely share and compare their plans, analyses, and results. With the advent of genomic knowledge, researchers are seeking to understand the genetics and genomics of complex human disease. They are combining their efforts into international consortia in order to take on problems that face individuals around the world, such as cancer and malaria — problems that are too large to solve by one country alone. These consortia bring (...) together diverse research groups from different parts of the world to focus on a common goal. Their projects may all focus on one disease or condition, but examine it from different perspectives and share the newly gained information with each other and the wider scientific community. (shrink)

: In this paper, I argue that stories about difference do not promote critical self and social understanding; rather, on the contrary, it is the way we understand ourselves that makes some stories relevantly different. I discuss the uncritical reception of a story about homosexuality in Cuba, urging attention to generalizations explaining judgments of importance. I suggest that some stories from the South will never be relevant to discussions about human flourishing until we critically examine ideas about freedom and democracy, (...) and their role in national identity, explaining the significance we give, or not, to such stories. (shrink)

In this essay, I suggest that significant insights of recent feminist philosophy lead, among other things, to the thought that it is not always better to choose than to be compelled to do what one might have done otherwise. However, few feminists, if any, would defend such a suggestion. I ask why it is difficult to consider certain ideas that, while challenging in theory, are, nonetheless, rather unproblematic in practice. I suggest that some questions are not pursued seriously enough by (...) philosophers, because certain popular liberal conceptions of individuality and freedom are taken too much for granted. (shrink)

In this essay, I suggest that significant insights of recent feminist philosophy lead, among other things, to the thought that it is not always better to choose than to be compelled to do what one might have done otherwise. However, few feminists, if any, would defend such a suggestion. I ask why it is difficult to consider certain ideas that, while challenging in theory, are, nonetheless, rather unproblematic in practice. I suggest that some questions are not pursued seriously enough by (...) philosophers, because certain popular liberal conceptions of individuality and freedom are taken too much for granted. (shrink)

This article looks at the context of research in treating burns at the dawn of the atomic age. Funded by the Army and other defense agencies, burn research increased as concerns over an atomic attack on an American city intensified.

On September 23, 1949, President Harry Truman announced that the Soviet Union had successfully detonated an atomic bomb. The news that the Soviet Union had done this came as little surprise to a number of American scientists and to some members of the intelligence community who had predicted that the Soviets would quickly acquire this advanced weapons technology. But for many Americans this news was disturbing. Truman’s announcement was taken up by, among others, a young Baptist evangelist named Billy Graham. (...) Opening a tent revival in Los Angeles just two days after the President’s report, Graham preached how the news of the Soviet bomb test had “startled the world” and launched an “arms race unprecedented in the history of the world.” President Truman, he informed his listeners, said that we “must be prepared for any eventuality at any hour….” Perhaps even more ominously he asked the crowd, “Do you know the area that is marked out for the enemy’s first atomic bomb? New York! Secondly, Chicago; and thirdly, the city of Los Angeles!” It was not only evangelical preachers who foresaw catastrophic implications from a growing arsenal of atomic weapons. (shrink)

Since November 2, 2002, every state's abortion law has stood at risk of complete revision. With one easily overlooked sentence, federal regulators declared in October 2002 that effective the following month, states could make available healthcare coverage directly to organisms at the moment of conception.

In this paper, I argue that stories about difference do not promote critical self and social understanding; rather, on the contrary, it is the way we understand ourselves that makes some stories relevantly different. I discuss the uncritical reception of a story about homosexuality in Cuba, urging attention to generalizations explaining judgments of importance. I suggest that some stories from the South will never be relevant to discussions about human flourishing until we critically examine ideas about freedom and democracy, and (...) their role in national identity, explaining the significance we give, or not, to such stories. (shrink)

METCO, America’s longest-running voluntary school desegregation program, has for 34 years bused black children from Boston’s city neighborhoods to predominantly white suburban schools. In contrast to the infamous violence and rage of forced school busing within the city in the 1970s, METCO has quietly and calmly promoted school integration. How has this program affected the lives of its graduates? Would they choose to participate if they had it to do over again? Would they place their own children on the bus (...) to suburbia? Sixty-five METCO graduates vividly recall their own stories in this revealing book. Susan E. Eaton interviewed program participants who are now adults, asking them to assess the benefits and hardships of crossing racial and class lines on their way to school. Their answers poignantly show that this type of racial integration is not easy—they struggled to negotiate both black and white worlds, often feeling fully accepted in neither. Even so, nearly all the participants believe the long-term gains outweighed the costs and would choose a similar program for their own children—though not without conditions and apprehensions. Even as courts and policymakers today are forcing the abandonment of desegregation, educators warn that students are better prepared in schools that reflect our national diversity. This book offers an accessible and moving account of a rare program that, despite serious challenges, provides a practical remedy for the persistent inequalities in American education. (shrink)

: In this essay, I suggest that significant insights of recent feminist philosophy lead, among other things, to the thought that it is not always better to choose than to be compelled to do what one might have done otherwise. However, few feminists, if any, would defend such a suggestion. I ask why it is difficult to consider certain ideas that, while challenging in theory, are, nonetheless, rather unproblematic in practice. I suggest that some questions are not pursued seriously enough (...) by philosophers, because certain popular liberal conceptions of individuality and freedom are taken too much for granted. (shrink)

This handbook is currently in development, with individual articles publishing online in advance of print publication. At this time, we cannot add information about unpublished articles in this handbook, however the table of contents will continue to grow as additional articles pass through the review process and are added to the site. Please note that the online publication date for this handbook is the date that the first article in the title was published online.

Households around the world have shifted structurally from a breadwinner/homemaker model to dual-income earning arrangements. What this trend means for marital power has been a contested issue among scholars. Most studies suggest that household power is determined by a complex interplay between each spouse's economic contributions to the household and existing gender norms. Few scholars, however, have examined how this interplay is worked out under particular political-economic conditions. Responding to the dearth of research on the developing world in this area, (...) the author examines a community in Costa Rica where neo-liberal economic restructuring has led to an increase in women's informal work and a decrease in men's income-earning power. Drawing from ethnographic and interview data on married life in Costa Rica, the author analyzes the effect that these trends have on marital power and the division of household labor. The author argues that changing economic circumstances may blur the traditional gender boundaries in Costa Rican households but they do not necessarily erase them. (shrink)

Re-consent in research, the asking for a new consent if there is a change in protocol or to confirm the expectations of participants in case of change, is an under-explored issue. There is little clarity as to what changes should trigger re-consent and what impact a re-consent exercise has on participants and the research project. This article examines applicable policy statements and literature for the prevailing arguments for and against re-consent in relation to longitudinal cohort studies, tissue banks and biobanks. (...) Examples of re-consent exercises are presented, triggers and non-triggers for re-consent discussed and the conflicting attitudes of commentators, participants and researchers highlighted. We acknowledge current practice and argue for a greater emphasis on ‘responsive autonomy,’ that goes beyond a one-time consent and encourages greater communication between the parties involved. A balance is needed between respecting participants' wishes on how they want their data and samples used and enabling effective research to proceed. (shrink)