While the bioethics literature demonstrates that the field has spent substantial time and thought over the last four decades on the goals, methods, and desired outcomes for service and training in bioethics, there has been less progress defining the nature and goals of bioethics research and scholarship. This gap makes it difficult both to describe the breadth and depth of these areas of bioethics and, importantly, to gauge their success. However, the gap also presents us with an opportunity to define (...) this scope of work for ourselves and to help shape the broader conversation about the impact of academic research. Because of growing constraints on academic funding, researchers and scholars in many fields are being asked to demonstrate and also forecast the value and impact of their work. To do that, and also to satisfy ourselves that our work has meaningful effect, we must understand how our work can motivate change and how that change can be meaningfully measured. In a field as diverse as bioethics, the pathways to and metrics of change will likewise be diverse. It is therefore critical that any assessment of the impact of bioethics research and scholarship be informed by an understanding of the nature of the work, its goals, and how those goals can and ought to be furthered. In this paper, we propose a conceptual model that connects individual bioethics projects to the broader goals of scholarship, describing the translation of research and scholarly output into changes in thinking, practice, and policy. One of the key implications of the model is that impact in bioethics is generally the result of a collection of projects rather than of any single piece of research or scholarship. Our goal is to lay the groundwork for a thoroughgoing conversation about bioethics research and scholarship that will advance and shape the important conversation about their impact. (shrink)

Dissecting Bioethics, edited by Tuija Takala and Matti Hayry, welcomes contributions on the conceptual and theoretical dimensions of bioethics. The department is dedicated to the idea that words defined by bioethicists and others should not be allowed to imprison people’s actual concerns, emotions, and thoughts. Papers that expose the many meanings of a concept, describe the different readings of a moral doctrine, or provide an alternative angle to seemingly self-evident issues are particularly appreciated. To submit a paper or to discuss (...) a suitable topic, contact Tuija Takala [email protected].:This article examines some of the assumptions and implications associated with the Belmont era context in which the concept of therapeutic misconception was forged. We argue that the justification of therapeutic misconception should be reconsidered based on less paternalistic and more participatory models of research. Finally, we identify conceptual and practical approaches that might better reflect contemporary research practice. (shrink)

Neuroenhancement involves the use of neurotechnologies to improve cognitive, affective or behavioural functioning, where these are not judged to be clinically impaired. Questions about enhancement have become one of the key topics of neuroethics over the past decade. The current study draws on in-depth public engagement activities in ten European countries giving a bottom-up perspective on the ethics and desirability of enhancement. This informed the design of an online contrastive vignette experiment that was administered to representative samples of 1000 respondents (...) in the ten countries and the United States. The experiment investigated how the gender of the protagonist, his or her level of performance, the efficacy of the enhancer and the mode of enhancement affected support for neuroenhancement in both educational and employment contexts. Of these, higher efficacy and lower performance were found to increase willingness to support enhancement. A series of commonly articulated claims about the individual and societal dimensions of neuroenhancement were derived from the public engagement activities. Underlying these claims, multivariate analysis identified two social values. The Societal/protective highlights counter normative consequences and opposes the use enhancers. The Individual/proactionary highlights opportunities and supports use. For most respondents these values are not mutually exclusive. This suggests that for many neuroenhancement is viewed simultaneously as a source of both promise and concern. (shrink)

This book brings together some of the best minds in neurology and philosophy to discuss the concept of personal identity and the moral dimensions of treating ...

Given dramatic increases in recent decades in the pace of scientific discovery and understanding of the functional organization of the brain, it is increasingly clear that engagement with the neuroscientific literature and research is central to making progress on philosophical questions regarding the nature and scope of human freedom and responsibility. While patterns of brain activity cannot provide the whole story, developing a deeper and more precise understanding of how brain activity is related to human choice and conduct is crucial (...) to the development of realistic, just, and intellectually rigorous models of human agency and moral responsibility. In this special issue, we acknowledge that “free will” and “moral responsibility” are not concepts with which neuroscience can directly engage, and instead focus on self-governance, and the capacities that contribute to self-governance, which are more tractable for scientific investigation and are prerequisites for the presence of moral responsibility. (shrink)

Pragmatic clinical trials offer important benefits, such as generating evidence that is suited to inform real-world health care decisions and increasing research efficiency. However, PCTs also present ethical challenges. One such challenge involves the management of information that emerges in a PCT that is unrelated to the primary research question, yet may have implications for the individual patients, clinicians, or health care systems from whom or within which research data were collected. We term these findings as?pragmatic clinical trial collateral findings,? (...) or?PCT-CFs?. In this article, we explore the ethical considerations associated with the identification, assessment, and management of PCT-CFs, and how these considerations may vary based upon the attributes of a specific PCT. Our purpose is to map the terrain of PCT-CFs to serve as a foundation for future scholarship as well as policy-making and to facilitate careful deliberation about actual cases as they occur in practice. (shrink)

The prospect of using genome technologies to modify the human germline has raised profound moral disagreement but also emphasizes the need for wide-ranging discussion and a well-informed policy response. The Hinxton Group brought together scientists, ethicists, policymakers, and journal editors for an international, interdisciplinary meeting on this subject. This consensus statement formulated by the group calls for support of genome editing research and the development of a scientific roadmap for safety and efficacy; recognizes the ethical challenges involved in clinical reproductive (...) applications of genome editing but, importantly, rejects the idea that human reproductive germline modification is necessarily morally unacceptable; and highlights the importance of meaningful engagement in discussions of genome editing and the development of regulation and oversight mechanisms to govern future uses of such technologies. (shrink)

Abstract:Vulnerability is an important criterion to assess the ethical justification of the inclusion of participants in research trials. Currently, vulnerability is often understood as an attribute inherent to a participant by nature of a diagnosed condition. Accordingly, a common ethical concern relates to the participant’s decisionmaking capacity and ability to provide free and informed consent. We propose an expanded view of vulnerability that moves beyond a focus on consent and the intrinsic attributes of participants. We offer specific suggestions for how (...) relational aspects and the dynamic features of vulnerability could be more fully captured in current discussions and research practices. (shrink)

In an earlier Dissecting Bioethics contribution, Debra J. H. Mathews, Joseph J. Fins, and Eric Racine challenge standard ways of thinking about the therapeutic misconception in the context of consent for research participation. They propose that instead of demanding “rational congruence” between how researchers and participants conceive of a given protocol, we should accept a less stringent standard of “reasonable coherence.” While Mathews, Fins, and Racine (MFR) provide some important insights, their proposal needs refinement. There is room (...) for a wide but not unlimited range of participant hopes and motivations. However, their model of reasonable coherence is too weak a standard for whether participants have adequate understanding of the scientific goals of a protocol. By the time participants are recruited for medical research, the goals of the protocol, having been set and agreed to through accepted scientific processes, are no longer open for alternate interpretations. This paper discusses this and other objections to MFR’s proposal. It then suggests that a concept of “deal breakers” might be useful in this context. (shrink)

In “Reason and the Republic of Opinion,” Leon Wieseltier bemoaned an age that reduces reason to utilitarian calculation and requires almost ritual genuflection before the altar of numbers. The spirit of this age is at work in the field of bioethics where, as Debra Mathews and colleagues point out in “A Conceptual Model for the Translation of Bioethics Research and Scholarship,” researchers and scholars are increasingly “being asked to demonstrate and also forecast the value and impact of their (...) work.” Despite the reductionism that typically accompanies the movements imbued with this spirit, the concern for accountability that stands behind the call for measuring success is legitimate. The bioethics community is thus fortunate to have such a distinguished group of scholars wrestling with these matters. Indeed, the effort of Mathews et al. to articulate a framework for determining success in bioethics research and scholarship is especially admirable precisely because they resist the temptation to reduce success to quantitative measures alone. That said, it is also important to say that it is nearly impossible to engage with the task these scholars have set for themselves and not succumb to a kind of data fetishism. It is well and good to talk about the complexity of bioethics as a field, but the language of “metrics,” “outputs,” “feedback loops,” “stakeholders,” and the like is not the language of the disciplines of history, literature, philosophy, or religious studies—all fields that Mathews et al. rightly credit with making important contributions to bioethics research and scholarship. (shrink)

What is bioethics to do when it strives to assess the quality of its research and scholarship and when it needs to justify its work to prospective funders, especially a funder like the National Institutes of Health that privileges empirical discovery? In “A Conceptual Model for the Translation of Bioethics Research and Scholarship,” Debra Mathews and colleagues take an important first step at advancing an answer. The authors describe what they call a translational process, whereby bioethics “outputs” are (...) translated into changes of three types: in thinking, practice, and policy. It goes nearly without saying that bioethics research and scholarship must be held accountable for changes in thinking. What raison d'etre do we have if not to deepen thinking, question assumptions, and encourage ourselves and others to examine hard issues from novel approaches? Assuredly it is hard to assess quality, and even harder to assess specific changes in thinking for which high-quality scholarship may be responsible, but it is a necessary goal and one for which we should strive without reservation. Bioethics should also affect policy and practice. We should document how it does and the extent to which it does as often and as prominently as possible. However, let us be wary of pinning too much on practice and policy changes as the primary way of establishing bioethics’ worth. (shrink)

In the article “A Conceptual Model for the Translation of Bioethics Research and Scholarship,” Debra Mathews and her colleagues want to apply to bioethics various translational concepts developed for biomedical research. According to experts in translational science, this would mean evaluating not only the extent to which research produces the “changes in thinking, practice, and policy” that interest Mathews et al. but also the appropriateness of bioethics training and the level of competency of people working in the (...) field. Their proposal thus raises two sets of questions. The first, which the authors recognize must be the starting point for their argument, is, what precisely is the field in question? The second is whether the tools of translational science provide the right means of measuring the achievements of bioethics. (shrink)

In “A Conceptual Model for the Translation of Bioethics Research and Scholarship,” Debra Mathews et al. aim to “begin an important discussion” about how to measure success in bioethics, and in doing so they set out a typology of bioethics research and scholarship with the arguably correct assumption that we cannot evaluate success in bioethics without first understanding what its goals are. I think the authors are correct in their claim that, in the current academic climate, having work (...) in bioethics deemed a success is likely to hinge, in some way, on its being translated into practice and having impact. I want, however, to add a critical voice in the form of three considerations that I feel ought to be attended to before the work progresses further, the first being that the typology Mathews et al. propose is highly problematic. Although there is a burgeoning literature on “empirical bioethics” methodologies that blend empirical and conceptual work, the typology appears to ignore this. (shrink)

This issue of the Hastings Center Report coincides with the annual conference of the American Society for Bioethics and Humanities, whose theme this year is “Where do we stand?” The issue addresses that theme with the article by Debra Mathews and colleagues and the set of brief response essays that follow it. Mathews et al., drawing on work carried out by the Association of Bioethics Program Directors, pose questions about how to understand and evaluate the worth of (...) bioethics research. Those questions require them to think very broadly about what bioethics is, in the first place, and how it is related to medicine, health policy, science, and society generally. In short, they are thinking at the highest level about the question, where do we stand? (shrink)

Background This paper examines the degree of agreement among simple dichotomous self-report, validated screening results, and biochemical screening results of prenatal alcohol and other drug use among pregnant women. Method Secondary analysis was conducted on a cohort of pregnant women 16 years or older, presenting for prenatal care in the greater Cape Town, South Africa. Dichotomous verbal screening is a standard of care, and pregnant patients reporting alcohol and other drug use in dichotomous verbal screenings were asked to engage in (...) screening using the Alcohol Smoking and Substance Involvement Screening Test and urinalysis. Results Significant agreements between dichotomous and ASSIST scores were observed. A higher rate of self-reported alcohol use was detected, relative to urine screening with a predictive value of 34.9; while underreporting of illicit substance use was observed with an overall predictive value of 50.0. Conclusion Dichotomous verbal screening was considered valid after comparison with the ASSIST; however, combined use with urine screenings can be recommended especially for identifying illicit substance use in order to accurately detect alcohol and other drug use in pregnancy, so that women can be identified and referred for appropriate interventions where needed. (shrink)

Bioethicists function in an environment in which their peers - healthcare executives, lawyers, nurses, physicians - assert the integrity of their fields through codes of professional ethics. Is it time for bioethics to assert its integrity by developing a code of ethics? Answering in the affirmative, this paper lays out a case by reviewing the historical nature and function of professional codes of ethics. Arguing that professional codes are aggregative enterprises growing in response to a field's historical experiences, it asserts (...) that bioethics now needs to assert its integrity and independence and has already developed a body of formal statements that could be aggregated to create a comprehensive code of ethics for bioethics. A Draft Model Aggregated Code of Ethics for Bioethicists is offered in the hope that analysis and criticism of this draft code will promote further discussion of the nature and content of a code of ethics for bioethicists. (shrink)

Background Community advisory boards have expanded beyond high-income countries and play an increasing role in low- and middle-income country research. Much research has examined CABs in HICs, but less is known about CABs in LMICs. The purposes of this scoping review are to examine the creation and implementation of CABs in LMICs, including identifying frequently reported challenges, and to discuss implications for research ethics. Methods We searched five databases for publications describing or evaluating CABs in LMICs. Two researchers independently reviewed (...) articles for inclusion. Data related to the following aspects of CABs were extracted from included publications: time, country, financial support, research focus, responsibilities, and challenges. Thematic analyses were used to summarize textual data describing challenges. Results Our search yielded 2005 citations, 83 of which were deemed eligible for inclusion. Most studies were published between 2010 and 2017. Upper-middle-income countries were more likely to have studies describing CABs, with South Africa, China, and Thailand having the greatest numbers. The United States National Institutes of Health was the main source of financial support for CABs. Many CABs focused on HIV research. Thirty-four studies reported how CABs influenced the informed consent process for clinical trials or other aspects of research ethics. CAB responsibilities were related to clinical trials, including reviewing study protocols, educating local communities about research activities, and promoting the ethical conduct of research. Challenges faced by CABs included the following: incomplete ethical regulations and guidance; limited knowledge of science among members of communities and CABs; unstable and unbalanced power relationships between researchers and local communities; poor CAB management, including lack of formal participation structures and absence of CAB leadership; competing demands for time that limited participation in CAB activities; and language barriers between research staff and community members. Several challenges reflected shortcomings within the research team. Conclusions Our findings examine the formation and implementation of CABs in LMICs and identify several ethical challenges. These findings suggest the need for further ethics training among CAB members and researchers in LMICs. (shrink)

The tension between scientific openness versus secrecy has existed for centuries (Hull 1985). However, both academics and practitioners have recently argued that openness by private firms has many positive attributes. The purpose of this research effort is to review the extant literature on openness and to develop hypotheses regarding its impact on organizational outcomes. We then use a unique database to test the idea with 87 companies. Our findings are that openness is beneficial to the firm from a science, technological, (...) and financial perspective and, perhaps, to the employees from an ethical viewpoint. The managerial and societal implications are also discussed. (shrink)

BackgroundPsychological resilience may reduce the impact of psychological distress to some extent. We aimed to investigate the mental health status of the public during the outbreak of coronavirus disease 2019 and explore the level and related factors of anxiety and depression.MethodsFrom February 8 to March 9, 2020, 3,180 public completed the Zung’s Self-Rating Anxiety Scale for anxiety, Zung’s Self-Rating Depression Scale for depression, the Connor–Davidson resilience scale for psychological resilience, and the Simplified Coping Style Questionnaire for the attitudes and coping (...) styles.ResultsThe number of people with depressive symptoms was 1,303. The number of people with anxiety symptoms was 1,184. The depressed group and anxiety group had less education, more unmarried and younger age, as well as had significant different in SDS total score, SAS total score, CD-RISC total score, and SCSQ score. The binary logistic regression showed that female, strength, and the subscales of active coping style in SCSQ remained protective factors and passive coping style and higher SAS score were risk factors for depression. Optimism in CD-RISC was a protective factor, and passive coping styles and higher SDS score were risk factors for anxiety.LimitationsThis study adopted a cross-sectional design and used self-report questionnaires.ConclusionThe mental health of the public, especially females, the younger and less educational populations, and unmarried individuals, should be given more attention. Individuals with high level of mental resilience and active coping styles would have lower levels of anxiety and depression during the outbreak of COVID-19. (shrink)

While the focus examines multiple levels and perspectives on care, it will go beyond description and analysis to discuss ethical, intersectional, and life-sustaining ways in which care may be enhanced.

One antidote to moral distress is stronger moral agency—that is, an enhanced ability to act to bring about change. The Clinical Ethics Residency for Nurses, an educational program developed and run in two large northeastern academic medical centers with funding from the Health Resources and Services Administration, intended to strengthen nurses’ moral agency. Drawing on Improving Competencies in Clinical Ethics Consultation: An Education Guide, by the American Society for Bioethics and Humanities, and on the goals of the nursing profession, CERN (...) sought to change attitudes, increase knowledge, and develop skills to act on one's knowledge. One of the key insights the faculty members brought to the design of this program is that knowledge of clinical ethics is not enough to develop moral agency. In addition to lecture‐style classes, CERN employed a variety of methods based in adult learning theory, such as active application of ethics knowledge to patient scenarios in classroom discussion, simulation, and the clinical practicum. Overwhelmingly, the feedback from the participants (sixty‐seven over three years of the program) indicated that CERN achieved transformative learning. (shrink)

The objective of this study is to incorporate topological space into the realm of n-Cylindrical Fuzzy Neutrosophic Sets (n-CyFNS), which are the most novel type of fuzzy neutrosophic sets. In this paper, we introduce n-Cylindrical Fuzzy Neutrosophic Topological Spaces (n-CyFNTS), n-Cylindrical Fuzzy Neutrosophic (n-CyFN) open sets, and n-CyFN closed sets. We also defined the n-CyFN base, n-CyFN subbase, and some related theorems here.

State Medical Boards (SMBs) can take severe disciplinary actions (e.g., license revocation or suspension) against physicians who commit egregious wrongdoing in order to protect the public. However, there is noteworthy variability in the extent to which SMBs impose severe disciplinary action. In this manuscript, we present and synthesize a subset of 11 recommendations based on findings from our team’s larger consensus-building project that identified a list of 56 policies and legal provisions SMBs can use to better protect patients from egregious (...) wrongdoing by physicians. (shrink)

This book shows through argument and numerous policy-related examples how understanding moral philosophy can improve economic analysis, how moral philosophy can benefit from economists' analytical tools, and how economic analysis and moral philosophy together can inform public policy. Part I explores the idea of rationality and its connections to ethics, arguing that when they defend their formal model of rationality, most economists implicitly espouse contestable moral principles. Part II addresses the nature and measurement of welfare, utilitarianism and cost-benefit analysis. Part (...) III discusses freedom, rights, equality, and justice - moral notions that are relevant to evaluating policies, but which have played little if any role in conventional welfare economics. Finally, Part IV explores work in social choice theory and game theory that is relevant to moral decision making. Each chapter includes recommended reading and discussion questions. (shrink)

This chapter examines how memory might be influenced by a variety of emotional states and conditions experienced by people with anxiety disorders. It reviews research performed with people who describe themselves as generally anxious, as well as with people who have been diagnosed as experiencing generalized anxiety disorder, post-traumatic stress disorder, phobias, obsessive-compulsive disorder, and panic disorder. In the context of research on “mood congruent” memory, one might expect that these individuals will better remember stimuli that “fit” with their anxious (...) thoughts and beliefs. In some cases, anxious people do show evidence of anxiety-related memory bias, but these probably result from special instances of emotional interpretation of events with ambiguous meaning. Under conditions less prone to interpretive ambiguity, anxious people tend not to remember in emotionally special ways. (shrink)

Many consumers are motivated to attend Farmers’ Markets because of the opportunity to purchase fresh and local products. The subsequent interactions at FMs provide an important pathway for the direct exchange of information. While previous research suggests that people value local food and the FM shopping experience and that purchasing directly from producers can lead to transformative learning, little is known about exactly how the shopping experience at FMs can influence consumer purchasing behavior. This study examines the extent of and (...) mechanism for such “influencing.” Using data from surveys, observations, and interviews gathered at six FMs, we analyze the interactions between consumers and vendors, including the motivations and values of both parties. We explore the question, “How do farmers’ markets facilitate change in consumer purchasing behavior?” We propose that the dynamic of change in consumer purchasing behavior at FMs takes root in the exchange of information between consumers and vendors during interactions. Our results suggest that there are three specific characteristics shared by FM consumers and vendors that lead to these meaningful interactions at FMs: symmetry of motivations to attend FMs, shared values, and mutual dependence on interactions. Then, when a consumer learns new information from a FM vendor during an interaction, the consumer is more likely to make a change in their immediate purchase. Information about the products for sale and the modes of production of those items can especially impact consumers’ immediate purchases at FMs. We found that FM interactions can also impact long-term purchasing behavior, such as purchasing more organic or locally produced foods. Our results suggest that FM interactions may have significant implications for consumer health, local economies, and the environment. (shrink)

Informal science learning sites create opportunities for children to learn about science outside of the classroom. This study analyzed children’s learning behaviors in ISLS using video recordings of family visits to a zoo, children’s museum, or aquarium. Furthermore, parent behaviors, features of the exhibits and the presence of an educator were also examined in relation to children’s behaviors. Participants included 63 children and 44 parents in 31 family groups. Results showed that parents’ science questions and explanations were positively related to (...) children observing the exhibit. Parents’ science explanations were also negatively related to children’s science explanations. Furthermore, children were more likely to provide science explanations when the exhibit was not interactive. Lastly there were no differences in children’s behaviors based on whether an educator was present at the exhibit. This study provides further evidence that children’s interactions with others and their environment are important for children’s learning behaviors. (shrink)

Using a survey of 393 employees who were natives and residents of China, Japan, and South Korea, we examined the extent to which employees from different countries within East Asia experience distributive justice when they perceived that their work outcomes relative to a referent other were equally poor, equally favorable, more poor, or more favorable. As predicted, we found that when employees perceived themselves relative to a referent other to be recipients of more favorable outcomes, Chinese and Korean employees were (...) less likely than Japanese employees to experience distributive injustice. We also found that these differences were partially mediated by employees’ level of materialism. Theoretical and practical implications of our findings are discussed. (shrink)

Hoarding disorder is a psychiatric condition characterized by difficulty discarding items and accumulation of clutter. Although studies have established the negative impact of HD and compulsive hoarding behavior, fewer have examined the impact on quality of life of hoarding behavior independent of obsessive–compulsive disorder. Moreover, specific aspects of QoL such as success in work/academics or satisfaction with interpersonal relationships have not been well-investigated. In this study, we examined, in a sample of 2100 adult participants obtained from Amazon Mechanical Turk, the (...) relationships between hoarding, OCD, and depression symptomatology and four QoL domains derived from a factor analysis of the Quality of Life Inventory. We performed linear regressions to examine associations between psychiatric symptomatology and QoL domains and then conducted mediation analyses to investigate the role of depressive symptomatology in the identified relationships. We found that while hoarding and obsessive–compulsive symptoms were both negatively associated with QoL, they were associated with different domains [hoarding was significantly associated, and was less strongly associated with success or enrichment. Mediation analyses confirmed the role of depression as a complete mediator of hoarding’s effect on total, environment, and family QoL, and as a partial mediator of hoarding’s effect on success and enrichment QoL. Further examination of the relationship between hoarding symptoms and QoL in those with mild, moderate, and severe depression indicated that in those with more severe depression, hoarding was associated with improved QoL, indicating a possible buffering or compensatory effect. The findings suggest a differential impact of hoarding and obsessive–compulsive symptoms on QoL and emphasize the importance of considering co-morbid depressive symptoms in designing more targeted interventions. Future studies should continue to investigate these complex relationships, given the high co-morbidity of hoarding and depression. (shrink)

The purpose of this article is threefold: (a) to describe the relevant ethical and legal issues associated with decisional capacity among minors and to discuss the importance of these concepts for children and adolescents living with HIV, (b) to provide a framework for assessing the decisional capacity of children and adolescents with HIV, and (c) to present a model for thinking about how to use this assessment data to guide action along the protection-autonomy continuum.

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)