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)
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)
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.
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)
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)
Archaeology in the Making is a collection of bold statements about archaeology, its history, how it works, and why it is more important than ever. This book comprises conversations about archaeology among some of its notable contemporary figures. They delve deeply into the questions that have come to fascinate archaeologists over the last forty years or so, those that concern major events in human history such as the origins of agriculture and the state, and questions about the way archaeologists go (...) about their work. Many of the conversations highlight quite intensely held personal insight into what motivates us to pursue archaeology; some may even be termed outrageous in the light they shed on the way archaeological institutions operate – excavation teams, professional associations, university departments. Archaeology in the Making is a unique document detailing the history of archaeology in second half of the 20th century to the present day through the words of some of its key proponents. It will be invaluable for anybody who wants to understand the theory and practice of this ever developing discipline. (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. 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. (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.
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)
How educators and students process and respond to emotions can either enhance or impede the development of the whole child. Social and emotional learning refers to the processes of developing social and emotional competencies, which depend on individuals’ capacity to recognize, understand, and manage emotions. Consensus across disciplines about the importance of EI highlights the need to advance the science of how to teach SEL. RULER, an evidence-based approach to teaching EI, provides an educational framework that encompasses a set of (...) practices for comprehensive SEL integration across a school or district. In this article, we describe RULER, explain how it teaches EI, and summarize evidence of its effectiveness. (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)
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)
This paper reviews 30 years of progress in U.S. cognitive science research related to education and training, as seen from the perspective of a research manager who was personally involved in many of these developments.
Systemic discrimination produces individuals with a degraded self-concept who therefore may not care about autonomy or set ends compatible with human flourishing. Under systemic discrimination, the dominant conceptual and evaluative framework does not enable the oppressed to articulate their humanity or the rationality of aspiring to full human flourishing. And the injustice of that system may be fully visible only from a perspective outside of that system.
: President Clinton's charge to the Advisory Committee on Human Radiation Experiments included the identification of ethical and legal standards for evaluating government-sponsored radiation experiments conducted during the Cold War. In this paper, we review the traditional account of the history of American research ethics, and then highlight and explain the significance of a number of the Committee's historical findings as they relate to this account. These findings include both the national defense establishment's struggles with legal and insurance issues concerning (...) human experiments, and the medical profession's perspective on human experimentation in the years following the Nuremberg Medical Trials. We conclude that the Committee's work both enriches the traditional view of the history of research ethics and opens important new areas for study. (shrink)
Approximately 62,000 people in this country await organ transplants. Ten years ago the waiting list numbered 16,000. The line gets longer every day. Up to 30% of those waiting in line will die waiting. We face a chronic shortage of organs. While demand for organs steadily increases, the number of cadaveric organ donors remains relatively constant: approximately 4,000 in 1988, and approximately 5,500 in 1997. In response to this environment of scarcity, policymakers have considered initiatives in a number of domains.
: 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)
Catharine MacKinnon's investigation of the role of sexuality in the subordination of women is a logical culmination of radical feminist thought. If this is correct, the position of her work relative to radical feminism is analogous to the place Parmenides's work occupied in ancient Greek philosophy. Critics of MacKinnon's work have missed their target completely and must engage her work in a different way if feminist theory is to progress past its current stalemated malaise.
In discussing Drucilla Cornell's remarks about Toni Morrison's Beloved, I consider epistemological questions raised by the acquiring of understanding of racism, particularly the deep-rooted racism embodied in social norms and values. I suggest that questions about understanding racism are, in part, questions about personal and political identities and that questions about personal and political identities are often, importantly, epistemological questions.
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)
Moral disengagement is a process whereby the self-regulatory mechanisms that would otherwise sanction unethical conduct can be selectively disabled. The present research proposed that moral disengagement might be adopted in the endorsement of asylum seeker policies in Australia, and in order to test this, a scale was developed and was validated in two studies. Factor analysis demonstrated that a 2-factor, 16-item structure had the best fit, and the construct validity of the scale was supported. Results provide evidence for the use (...) of moral disengagement in the context of asylum seekers as a means of rationalizing conduct that may otherwise be sanctioned. (shrink)
While researchers have examined the types of ethical issues that arise in long-term care, few studies have explored long-term care nurses’ experiences of moral distress and fewer still have examined responses to initial moral distress. Using an interpretive description approach, 15 nurses working in long-term care settings within one city in Canada were interviewed about their responses to experiences of initial moral distress, resources or supports they identified as helpful or potentially helpful in dealing with these situations, and factors that (...) hindered nurses in their responses. Using a thematic analysis process, three major themes were identified from the nurses’ experiences: (i) the context of the situation matters; (ii) the value of coming together as a team; and (iii) looking for outside direction. The work of responding to initial moral distress was more fruitful if opportunities existed to discuss conflicts with other team members and if managers supported nurses in moving their concerns forward through meetings or conversations with the team, physician, or family. Access to objective others and opportunities for education about ethics were also identified as important for dealing with value conflicts. (shrink)
Background Social media and Internet technologies present several emerging and ill-explored issues for a modern healthcare workforce. One issue is patient-targeted Googling, which involves a healthcare professional using a social networking site or publicly available search engine to find patient information online. The study’s aim was to address a deficit in data and knowledge regarding PTG, and to investigate medical student use of SNSs due to a close association with PTG. Method The authors surveyed final year medical students at the (...) Otago Medical School, University of Otago in January 2016. A subset completed focus groups that were analysed using thematic analysis to identify key themes relating to students’ attitudes towards PTG, and reasons why they might engage in PTG. Results Fifty-four students completed the survey, which showed that PTG was uncommon. Attitudes were varied and context dependent. Most participants saw problems with PTG and favoured more explicit guidance on the issue. SNS usage was high ; participants were concerned by the content of their SNS profiles and who they were connecting with online. Participants showing high SNS use were 1.83 times more likely to have conducted PTG than lower use groups. Conclusions The diverse attitudes uncovered in this study indicated that teaching or guidelines could be useful to healthcare professionals considering PTG. Though ethically problematic, PTG may be important to patient care and safety. The decision to conduct PTG should be made with consideration of ethical principles and the intended use of the information. (shrink)
Building on more than two decades offeminist analysis of the family, this article takes a neoinstitutionalist approach to examine some of the ways that sex, gender, and sexual orientation intersect in lesbianheaded two-parent families, affecting how they construct their roles as mothers. Institutionalist theory tends to de-emphasize how actors deliberately construct social arrangements such as parenting roles within the family. The authors' analysis of interviews from 14 lesbian mothers remedies this deficiency by focusing both on how they draw upon and (...) transform institutionalized scripts, practices, and understandings of family roles and relations. Their findings reveal how these mothers reinscribed gendered understandings while simultaneously challenging heteronormative ones in their efforts to construct and maintain socially viable two-parent families. (shrink)