The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists....

Lee emphasizes the need to better understand the moral relationship between researchers and participants connoted by precision medicine, with the framework of “the gift” offering bioethics a...

While the 2022 Supreme Court of the United States decision in Dobbs v Jackson Women’s Health Organization may bring the contingent rights of pregnant people to refuse interventions into sharper foc...

Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”—one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this “paradigm shift,” creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a “scientific/intellectual social movement” within biomedicine. Proponents of this (...) movement usually offer four ways in which their approach to medical diagnosis and health care improves upon current practices, arguing that it is more “personalized,” “predictive,” “preventive,” and “participatory” than the medical status quo. Initially, it was personalization that seemed to best sum up the movement's appeal. By 2012, however, powerful opinion leaders were abandoning “personalized medicine” in favor of a new label: “precision medicine.” The new label received a decisive seal of approval when, in January 2015, President Obama unveiled plans for a national “precision medicine initiative” to promote the development and use of genomic tools in health care. (shrink)

The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...) are embracing this populist rhetoric to encourage wider public participation. We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of “citizen science” outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of “public engagement” when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the “care.data” project of the National Health Service in England, and its proactive uses in the “Precision Medicine Initiative” of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of “citizen science,” the contexts in which it is used, and its demands with respect to participation, engagement, and governance. (shrink)

The American Journal of Bioethics, Volume 12, Issue 6, Page 53-55, June 2012.

Bioethics and feminist scholarship has explored various justice implications of nonmedical sex selection and family balancing. However, prospective users’ viewpoints have been absent from the debate over the socially acceptable bounds of nonmedical sex selection. This qualitative study provides a set of empirically grounded perspectives on the moral values that underpin prospective users’ conceptualizations of justice in the context of a family balancing program in the United States. The results indicate that couples pursuing family balancing understand justice primarily in individualist (...) and familial terms rather than in terms of social justice for women and girls or for children resulting from sex selection. Study participants indicated that an individual’s desire for gender balance in their family is ethically complex and may not be inherently sexist, immoral, or socially consequential, particularly given the social context in which they live. Our findings suggest that the social conditions that contribute to prospective users’ desires for gender balance in their families may direct them away from recognizing or engaging broader social justice concerns relating to sexism and stratified reproduction. (shrink)

Federal law often avoids setting minimum standards for women’s health and reproductive rights issues, leaving legislative and regulatory gaps for the states to fill as they see fit. This has mixed results. It can lead to state innovation that improves state-level health outcomes, informs federal health reform, and provides data on best practices for other states. On the other hand, some states may use the absence of a federal floor to impose draconian policies that pose risks to women’s and maternal (...) health. Health reforms at the federal level must trod carefully to enable state innovation, while imposing foundational safeguards for promoting women’s health nationwide. (shrink)

Oocyte donation raises conflicts of interest and commitment for physicians but little attention has been paid to how to reduce these conflicts in practice. Yet the growing popularity of assisted reproduction has increased the stakes of maintaining an adequate oocyte supply and minimizing conflicts. A growing body of professional guidelines, legal challenges to professional self-regulation, and empirical research on the practice of oocyte donation all call for renewed attention to the issue. As empirical findings better inform existing conflicts and their (...) potential harms, we can better attempt to reduce these conflicts. To that end, the article first describes the nature of conflicts in oocyte donation and relevant regulations and professional guidelines. We then describe studies on conflicts at four phases of oocyte donation: recruitment, screening, stimulation, and post-stimulation monitoring. Next we consider three models for conflict reduction in medicine generally: improved professional self-regulation, outright restriction like Stark anti-referral laws, or the use of conflict mediators, like in living organ donation. We ultimately conclude that improved professional self-regulation is a reasonable starting place for oocyte donation. (shrink)

Preterm birth is defined as any birth that occurs prior to 37 weeks gestation, and is a leading cause of infant mortality, neurological disabilities, breathing, feeding and vision problems, and hea...

Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of (...) research participants, as well as the public, in the absence of regulatory requirements and without discouraging independent, innovative scientific inquiry. The article recommends a series of measures, including education, consultation, transparency, self-governance, and regulation to strike the appropriate balance. (shrink)

McCoy and colleagues (2023) offer a reflective framework for data ethics and governance with several historical bioethics principles as a foundation. Their framework is one among a plethora of othe...

We are grateful to Friesen and colleagues for drawing attention to the tension between the protection of populations that may experience vulnerability with their inclusion in research (Friesen et a...

Advocates for the professionalization of clinical bioethics argue that bioethics professionals play an important role in contemporary medicine and patient care, especially when addressing complex ethical questions that arise in the delivery of reproductive medicine. For bioethics consultants to serve effectively, they need adequate training in the medical and ethical issues that patients and clinicians will face, and they need skills to facilitate effective dialog among all parties. Because clinical ethics consultation is a “high‐stakes endeavor” that can acutely affect patient (...) care, efforts are under way to ensure that bioethics consultants have the competence to provide such guidance. Yet to date, no studies have examined whether the training of bioethics consultants meets the needs of health care professionals who are on the front lines of such issues. In fact, limited information is available on the reproductive health issues that bioethics training programs address or the degree to which these programs meet the needs of patients confronting reproductive health decisions and their clinicians. It is therefore important to answer this key question: What are the primary ethical issues encountered in reproductive medicine that currently affect patient care? Equally important, are bioethics training programs prepared to address those issues?To begin to answer these questions, we conducted parallel surveys of directors of graduate bioethics training programs and obstetrician‐gynecologists. The goal of this project is to lay the groundwork to establish a working partnership between bioethics educators and reproductive medicine practitioners to address the often troubling and frequently complex ethical issues in reproductive medicine. (shrink)

IntroductionClassifying the ethical issues in clinical ethics consultations is important to clinical practice and scholarship. We conducted a systematic review to characterize the typologies used to analyze clinical ethics consultations.MethodsWe identified empirical studies of clinical ethics consultation that reported types of ethical issues using PubMed. We screened these articles based on their titles and abstracts, and then by a review of their full text. We extracted study characteristics and typologies and coded the typologies.ResultsWe reviewed 428 articles; 30 of the articles (...) fulfilled our inclusion criteria. We identified 27 unique typologies. Each typology contained five to 47 categories (mean = 18). The most common categories were do-not-attempt-resuscitation orders (19 typologies, 70 percent), capacity (18 typologies, 67 percent), withholding (18 typologies, 67 percent), withdrawing (17 typologies, 63 percent), and surrogate or proxy (16 typologies, 59 percent). Only seven (26 percent) of the typologies contained all five of the most common categories. The typologies we used to characterize clinical ethics consultations exhibit significant heterogeneity and several conceptual limitations. A common typology is needed whose development may require multi-institutional collaboration and could be facilitated by professional organizations. (shrink)

In light of a history of categorical exclusion, it is critical that pregnant people are included in research to help improve the knowledge base and interventions needed to address public health. Yet the volatile legal landscape around reproductive rights in the United States threatens to undue recent progress made toward the greater inclusion of pregnant people in research. We offer ethical and practical guidance for researchers, sponsors, and institutional review boards to take specific steps to minimize legal risks and ensure (...) the ethical conduct of research with pregnant people in an evolving legal environment. (shrink)

This valuable resource provides academic and student affairs practitioners with the tools to make informed legal and ethical decisions in their college and university contexts. Law is constantly changing and is interpreted differently from campus to campus based on institutional culture and history. This text provides higher education practitioners with tools to anticipate practical and responsible action, engaging readers in anticipatory and reflective practice. In this text, Boettcher and Salinas introduce the Institutional Intelligence Model, a helpful framework that guides practitioners (...) in examining a wide variety of campus issues. Throughout the book, readers can explore perspectives from current practitioners and utilize case studies to examine specific topics including admissions, academics, student living, confidential resources, and graduate student experiences. By using the strategies in this book, practitioners will be equipped to successfully navigate legal and ethical issues on their campuses. This text is ideal for graduate students, student and academic affairs professionals, and those in leadership positions responsible for working with and supporting students and staff teams. (shrink)

The differential activation hypothesis (DAH; Teasdale, 1988) proposes that individuals who are vulnerable to depression can be distinguished from non-vulnerable individuals by the degree to which negative thoughts and maladaptive cognitive processes are activated during sad mood. While retrieval of negative autobiographical memories is noted as one such process, the model does not articulate a role for deficits in recalling positive memories. Two studies were conducted to compare the autobiographical memory characteristics of never-depressed and formerly depressed individuals following a sad (...) mood induction. In Study 1, features of negative memories of never-depressed and formerly depressed individuals did not differ, either in neutral or sad mood. For positive memories, groups did not differ in neutral mood, but following a sad mood induction, formerly depressed individuals rated their positive memories as less vivid than their never-depressed counterparts. Study 2 examined positive autobiographical memory features more comprehensively and replicated the finding that in a sad mood formerly depressed individuals recalled less vivid positive memories than never-depressed controls. These findings suggest that the phenomenological features of positive memories could represent an important factor in depressive vulnerability, and, more broadly, that depression may be associated with a deficit in the processing of positive material. (shrink)

The future of work is forcing the world to adjust to a new paradigm of working. New skills will be required to create and adopt new technology and working methods. Additionally, cognitive skills, particularly creative problem-solving, will be highly sought after. The future of work paradigm has threatened many occupations but bolstered others such as engineering. Engineers must keep up to date with the technological and cognitive demands brought on by the future of work. Using an exploratory mixed-methods approach, our (...) study sought to make sense of how engineers understand and use creative problem solving. We found significant associations between engineers’ implicit knowledge of creativity, exemplified creative problem solving, and the perceived value of creativity. We considered that the work environment is a potential facilitator of creative problem-solving. We used an innovative exceptional cases analysis and found that the highest functioning engineers in terms of knowledge, skills, and perceived value of creativity, also reported working in places that facilitate psychosocially safe environments to support creativity. We propose a new theoretical framework for a creative environment by integrating the Four Ps and psychosocial safety climate theory that management could apply to facilitate creative problem solving. Through the acquisition of knowledge to engage in creative problem solving as individuals or a team, a perception of value must be present to enforce the benefit of creativity to the engineering role. The future of work paradigm requires that organisations provide an environment, a psychosocially safe climate, for engineers to grow and hone their sought-after skills that artificial technologies cannot currently replace. (shrink)

Taking inspiration from the film Wit, adapted from Margaret Edson’s Pulitzer Prize-winning play, this article explores the particularities of witnessing a cinematic cancer narrative juxtaposed with the author’s own cancer narrative. The analysis reveals the tenuous line between death and dying, illness and wellness, life and living and the resulting identities shaped in the process of understanding both from a personal and professional lens. By framing these representations of illness experience within the narrative constructions of drama, time, metaphor and morality, (...) the personal stories of intellectual knowledge converging with intimate and embodied knowing are revealed. (shrink)

_Using Art Media in Psychotherapy_ makes a thoughtful and contextual argument for using graphic art materials in psychotherapy, providing historical context for art materials and their uses and incorporating them with contemporary practices and theories. Written with an analytic focus, many of the psychological references nod to Jung and post-Jungian thought with keen attention to image and to symbolic function. This book jettisons the idea of reductionist, cookbook approaches and instead provides an integrated and contextual understanding of the origins of (...) each art form as well as an insightful use for each in its application in mental health healing practices. _Using Art Media in Psychotherapy _gives clinicians and students alike the tools they need to offer psychologically minded and clinically astute choices that honor their clients. (shrink)

We remember in social contexts. We reminisce about the past together, collaborate to remember shared experiences, and, even when we are alone, we remember in the context of our communities and cultures. Taking an interdisciplinary approach throughout, this text comprehensively covers collaborative remembering across the fields of developmental psychology, cognitive psychology, social psychology, discourse processing, philosophy, neuropsychology, design, and media studies. It highlights points ofoverlap and contrast across the many disciplinary perspectives and, with its sections on "Approaches of Collaborative Remembering" (...) and "Applications of Collaborative Remembering", also connects basic and applied research.Written with late-stage undergraduates and early-stage graduates in mind, the book is also a valuable tool for memory specialists and academics in the fields of psychology, cognitive science and philosophy who are interested in collaborative memory research. (shrink)