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)

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)

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)

BackgroundGenealogical research and ancestry testing are popular recreational activities but little is known about the impact of the use of these services on clients’ biological and social families. Ancestry databases are being enriched with self-reported data and data from deoxyribonucleic acid analyses, but also are being linked to other direct-to-consumer genetic testing and research databases. As both family history data and DNA can provide information on more than just the individual, we asked whether companies, as a part of the consent (...) process, were informing clients, and through them clients’ relatives, of the potential implications of the use and linkage of their personal data.MethodsWe used content analysis to analyse publically-available consent and informational materials provided to potential clients of ancestry and direct-to-consumer genetic testing companies to determine what consent is required, what risks associated with participation were highlighted, and whether the consent or notification of third parties was suggested or required.ResultsWe identified four categories of companies providing: 1) services based only on self-reported data, such as personal or family history; 2) services based only on DNA provided by the client; 3) services using both; and 4) services using both that also have a research component. The amount of information provided on the potential issues varied significantly across the categories of companies. ‘Traditional’ ancestry companies showed the greatest awareness of the implications for family members, while companies only asking for DNA focused solely on the client. While in some cases companies included text recommending clients inform their relatives, showing they recognised the issues, often it was located within lengthy terms and conditions or privacy statements that may not be read by potential clients.ConclusionsWe recommend that companies should make it clearer that clients should inform third parties about their plans to participate, that third parties’ data will be provided to companies, and that that data will be linked to other databases, thus raising privacy and issues on use of data. We also suggest investigating whether a ‘generational consent’ should be created that would include more than just the individual in decisions about participating in genetic investigations. (shrink)

This book is a rich blend of analyses by leading experts from various cultures and disciplines. A compact introduction to a complex field, it illustrates biotechnology's profound impact upon the environment and society. Moreover, it underscores the vital relevance of cultural values. This book empowers readers to more critically assess biotechnology's value and effectiveness within both specific cultural and global contexts.

The regulation of stem cell research is an issue that has drawn much comment, criticism and even judicial arbitration in recent years. An emerging issue, addressed in this article, is how the fruits of that research-stem cell medicine-are likely to be regulated en route from lab to market. Taking account of the ethical, legal, social and safety issues raised by stem cell medicine and the goals of governance, the article explains the relevant regulatory instruments (e.g. the draft UK Stem Cell (...) Bank Code, the EU Directive on Human Tissue, the EU Directives on medical products and devices, and the Human Tissue Act 2004) and critically examines the framework they provide. (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)

Fairness in evaluation processes for women in science and engineering is only one of a set of issues that need to be addressed to reach gender equality. This article uses concepts from Amartya Sen’s work on inequality to frame gender issues in science and technology policy. Programs that focus on increasing the number of women in science and engineering careers have not generally addressed a broader set of circumstances that intersect with gender at various economic levels and stages of life. (...) The agendas in research and innovation policies also need to reflect these issues, and fair allocation of resources within both science and technology needs to be on the agenda. Getting women into high-level positions is not enough. Articulating the full research and innovation agendas for women will require broader participatory processes. (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)

Susan Babbitt dissects a common moral perspective for judging importance which she calls 'moral imagination.' In order to explain ourselves, and to recognize in others, what we often already perceive intuitively to be right or good, we instinctively create a story as a framework. She argues that we intentionally create stories which appear artless or chaotic, something capable of imperfection. This allows the story-maker to eventually deviate if he or she chooses, without a loss of hope, even if that (...) direction and goal may not yet be able to be fully articulated or defended. (shrink)

The Physician Orders for Life-Sustaining Treatment Paradigm is designed to improve end-of-life care by converting patients’ treatment preferences into medical orders that are transferable throughout the health care system. It was initially developed in Oregon, but is now implemented in multiple states with many others considering its use. Accordingly, an observational study was conducted in order to identify potential legal barriers to the implementation of a POLST Paradigm. Information was obtained from experts at state emergency medical services and long-term care (...) organizations/agencies in combination with a review of relevant state law. Legal analysis of survey responses and existing laws identified several potential state legal barriers to a POLST Paradigm implementation. The most potentially problematic barriers are detailed statutory specifications for out-of-hospital DNR protocols. Other potential barriers include limitations on the authority to consent to forgo life-sustaining treatments, medical preconditions, and witnessing requirements for out-of-hospital DNR protocols. (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)

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

One facet of the control of gene expression is long‐range promoter regulation by distant enhancers. It is an important component of the regulation of genes that control metazoan development and has been appreciated for some time but the molecular mechanisms underlying this regulation have remained poorly understood. A recent study by Cleard and colleagues1 reports the first in vivo evidence of chromatin looping and boundary element promoter interaction. Specifically, they studied the function of a boundary element within the cis‐regulatory region (...) of the Abdominal‐B (Abd‐B) gene of Drosophila melanogaster. BioEssays 29: 7–10, 2007. © 2006 Wiley Periodicals, Inc. (shrink)

I understand humanism to be the meta-ethical view that there exist discoverable (nonmoral) truths about the human condition, that is, about what it means to be human. We might think that as long as I believe I am realizing my unique human potential, I cannot be reasonably contradicted. Yet when we consider systemic oppression, this is unlikely. Systemic oppression makes dehumanizing conditions and treatment seem reasonable. In this paper, I consider the nature of understanding—drawing in particular upon recent defenses of (...) realism in the philosophy of science—and argue that humanism makes sense if we recognize more thoroughly the role of cause and effect in practical deliberation. By this I mean the cause-and-effect relation between mind and body and between minds, bodies, and the world. Three philosophical sources—Marxism, Buddhism and Christianity—show what this might mean, as I indicate in the second half of the paper. (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 work has been selected by scholars as being culturally important, and is part of the knowledge base of civilization as we know it. This work was reproduced from the original artifact, and remains as true to the original work as possible. Therefore, you will see the original copyright references, library stamps (as most of these works have been housed in our most important libraries around the world), and other notations in the work.This work is in the public domain in (...) the United States of America, and possibly other nations. Within the United States, you may freely copy and distribute this work, as no entity (individual or corporate) has a copyright on the body of the work.As a reproduction of a historical artifact, this work may contain missing or blurred pages, poor pictures, errant marks, etc. Scholars believe, and we concur, that this work is important enough to be preserved, reproduced, and made generally available to the public. We appreciate your support of the preservation process, and thank you for being an important part of keeping this knowledge alive and relevant. (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.

When surgeons transplant animal organs into humans, people who did not receive the organs incur risks. These third parties may stand near or far in time or space. No one knows the likelihood, breadth, or nature of the risks in question. The common wisdom among infectious-disease specialists is that in the best of xenotransplant conditions, such third-party risk may be minimized but not eliminated.

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)

This paper describes the attributes of good mathematics teachers in the UK. These are derived from the material provided by 80 schools to applicants for mathematics teaching posts in the UK. The assumption is made that schools are trying to recruit the very best teacher and hence will have listed those attributes that they believe good teachers to have. Many of the attributes sought are not specifically about the teaching of mathematics. Indeed much about competency in the teaching of mathematics (...) is assumed and not made explicit. The requirements of schools are compared and contrasted with the Standards detailed in current Initial Teacher Training requirements and the Career Entry Profile used by newly qualified teachers. (shrink)

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)