This paper considers the revolutionary developments occurring in the field of genetic mapping and the genetic identification of disease propensities. These breakthroughs are discussed relative to the ethical and economic implications for the insurance industry. Individual's privacy rights and rights to employment must be weighed against the insurers desire for better estimates of future loss costs associated with health, life and other insurances. These are in turn related to the fundamental conception of insurance as a financial intermediary versus insurance as (...) a vehicle for social policy. (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)

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)

Organizations are increasingly embedded with consultants and other non-employees who have the opportunity to engage in wrongdoing. However, research exploring the reporting intentions of employees regarding the discovery of wrongdoing by consultants is scant. It is important to examine reporting intentions in this setting given the enhanced presence of consultants in organizations and the fact that wrongdoing by consultants changes a key characteristic of the wrongdoing. Using an experimental approach, the current paper reports the results of a study examining employees' (...) reporting intentions subsequent to their discovery of wrongdoing by a consultant. The results of the study indicate that perceptions about the seriousness of a wrongdoing, personal costs and personal responsibility related to reporting a wrongdoing, and moral-equity judgments are significantly associated with reporting intentions for a normal reporting channel. Only perceptions of seriousness and personal costs are significantly associated for an anonymous reporting channel. Lastly, while personal costs for the anonymous reporting channel were lower than the normal reporting channel, reporting intentions were similar across the two channels. (shrink)

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

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)

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)

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)

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)

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)

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that the parents (...) will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

The current paper provides readers some clarifications on the nature and goals of mass media campaigns designed to promote organ donation. These clarifications were necessitated by an earlier essay by Rady et al. (Med Health Care Philos 15:229–241, 2012) who present erroneous claims that media promotion campaigns in this health context represent propaganda that seek to misrepresent the transplantation process. Information is also provided on the nature and relative power of media campaigns in organ donation promotion.

This study examined self-recognition processing in both the auditory and visual modalities by determining how comparable hearing a recording of one’s own voice was to seeing photograph of one’s own face. We also investigated whether the simultaneous presentation of auditory and visual self-stimuli would either facilitate or inhibit self-identification. Ninety-one participants completed reaction-time tasks of self-recognition when presented with their own faces, own voices, and combinations of the two. Reaction time and errors made when responding with both the right and (...) left hand were recorded to determine if there were lateralization effects on these tasks. Our findings showed that visual self-recognition for facial photographs appears to be superior to auditory self-recognition for voice recordings. Furthermore, a combined presentation of one’s own face and voice appeared to inhibit rather than facilitate self-recognition and there was a left-hand advantage for reaction time on the combined-presentation tasks. (shrink)

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that the parents (...) will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (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)

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)

This study investigates the effectiveness of pedagogical practices used to teach business ethics. The business community has greatly increased its demands for better ethics education in business programs. Educators have generally agreed that the ethical principles of business people have declined. It is important, then, to examine how common methods of instruction used in business ethics could contribute to the development of higher levels of moral judgment competence for students. To determine the effectiveness of these methods, moral judgment competence levels (...) for undergraduate and graduate students from three institutions were measured and compared based upon the pedagogical method used in a business class. Significant differences were found for moral reasoning and moral competence scores depending on the method used for ethics instruction. Students in classes with more highly integrated ethics coverage scored higher in moral reasoning and moral competence. (shrink)

A live issue in anthropology and development studies, humanism is not typically addressed by analytic philosophers. Arguing for humanism as a view about truths, Humanism and Embodiment insists that disembodied reason, not religion, should be the target of secularists promoting freedom of enquiry and human community. Susan Babbitt's original study presents humanism as a meta-ethical view, paralleling naturalistic realism in recent analytic epistemology and philosophy of science. Considering the nature of knowledge, particularly the radical contingency of knowledge claims upon (...) causal mechanisms, religious thinkers like Thomas Merton and Ivan Illich offer more scientific conceptions of practical deliberation than are offered by some non-religious ethicists. Drawing on philosophical sources such as Marxism, Buddhism and Christianity, this original study considers implications of an embodied conception of reason, revealing philosophical, practical and political implications. (shrink)

Successful preimplantation genetic diagnosis (PGD) to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization (IVF) to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that (...) the parents will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing” (rather than to avoid a sex-linked disorder), PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (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.

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)

Lingering skepticism about climate change might be due in part to the way climate projections are perceived by members of the public. Variability between scientists’ estimates might give the impression that scientists disagree about the fact of climate change rather than about details concerning the extent or timing. Providing uncertainty estimates might clarify that the variability is due in part to quantifiable uncertainty inherent in the prediction process, thereby increasing people's trust in climate projections. This hypothesis was tested in two (...) experiments. Results suggest that including uncertainty estimates along with climate projections leads to an increase in participants’ trust in the information. Analyses explored the roles of time, place, demographic differences, and initial belief in climate change. Implications are discussed in terms of the potential benefit of adding uncertainty estimates to public climate projections. (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)

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at (...) an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangibl... (shrink)

Past studies have shown that women’s volunteer work benefits communities but that women themselves tend to minimize their efforts. Most of these studies, however, have been limited to women volunteering in suburban and urban contexts. Drawing on a study of women volunteers in rural Iowa, the authors find that women frame their volunteer experiences in three ways: as an expression of their maternal nature, as a way to socialize, and as a contribution to the local economy. The authors’ findings depart (...) from past research in that the women in their sample do not downplay the importance of their volunteer work; rather, they recognize the importance of their unpaid labor for the social and economic vitality of the community. The authors argue this recognition stems from the particular context in which their volunteerism takes place, namely, in a devastated rural economy in which future economic potential rests on women’s hospitality work. (shrink)

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)