We investigated family members’ lived experience of Parkinson’s disease aiming to investigate opportunities for well-being. A lifeworld-led approach to healthcare was adopted. Interpretative phenomenological analysis was used to explore in-depth interviews with people living with PD and their partners. The analysis generated four themes: It’s more than just an illness revealed the existential challenge of diagnosis; Like a bird with a broken wing emphasizing the need to adapt to increasing immobility through embodied agency; Being together with PD exploring the kinship (...) within couples and belonging experienced through support groups; and Carpe diem! illuminated the significance of time and fractured future orientation created by diagnosis. Findings were interpreted using an existential-phenomenological theory of well-being. We highlighted how partners shared the impact of PD in their own ontological challenges. Further research with different types of families and in different situations is required to identify services required to facilitate the process of learning to live with PD. Care and support for the family unit needs to provide emotional support to manage threats to identity and agency alongside problem-solving for bodily changes. Adopting a lifeworld-led healthcare approach would increase opportunities for well-being within the PD illness journey. (shrink)

Body dysmorphic disorder is a debilitating mental health condition that presently affects ~2% of the general population. Individuals with BDD experience distressing preoccupations regarding one or more perceived defects in their physical appearance. These preoccupations and perceived distortions can have a profound impact on key areas of social functioning and psychological health. Individuals’ BDD origins have not been explored in significant depth and have been, often unhelpfully, conflated with social media usage and exposure to idealistic imagery of the body. Such (...) generalisations fail to acknowledge the complexity of BDD development and onset, highlighting the importance of moving towards an understanding of people’s implicit theories regarding their own experience. It is therefore essential to gain insight into how individuals make sense of the experiences which they believe led to the development and onset of BDD. The aim of this exploratory study was to elicit and phenomenologically analyse the accounts of individuals with lived experience of BDD in order to examine their beliefs about its origins and understand how they navigate the world with a distorted sense of self. Participants provided written and verbal accounts regarding both their BDD onset and experiences of living with the disorder. Both components of the study were analysed using Interpretative Phenomenological Analysis. Four main themes were generated from the data: Exposure to bullying and external critique of appearance; Experiencing rejection, shame, and a sense of not being enough; Developing an awareness of the solidification of concerns, and Learning about and reflecting upon triggers. Participants attributed their BDD onset to adverse experiences such as childhood bullying, receiving appearance-focused criticism, rejection and being subjected to emotional and physical abuse. The findings from this study highlight the complexity of BDD development and onset in individuals, and the need for appropriate care and treatment for those affected by BDD. (shrink)

Historically, Judeo-Christian doctrine has been used to justify the mistreatment of nonhuman animals through the “dominion” view of human superiority. Linzey and others have questioned this perspective, suggesting that critical tenets of religion, and particularly Christianity, support the ethical treatment of other animals by defining dominion as stewardship. This article considers how framing and networks help explain the complex relationship between religion and support for animal rights. We offer ways in which social networks and framing might inform the beliefs and (...) behaviors of religious individuals who support animal rights as well as the strategies of the animal rights movement intended to appeal to such individuals. (shrink)

The social facilitation of eating plays a significant role in influencing individuals’ eating decisions. However, how social eating cues are processed in health promotion messages is unclear. This study examined individuals’ food craving in response to social cues in images and emotional experiences, perceived threat, perceived efficacy, behavioral intentions, and motivational coactivation elicited by social eating cues in obesity prevention fear appeals. Results suggested that the presence of a group of people eating in an image facilitated food craving for the (...) presented foods. Moreover, fear appeals that presented obesity and its consequences with more social eating cues, versus individual eating cues, generated greater positive emotional responses, perceived threat severity, response and self-efficacy, and motivational coactivation indicating more attention and threat vigilance. However, these cues also generated fewer self-reported intentions to change unhealthy eating behaviors. Implications and suggestions for future research are discussed. (shrink)

The bioethical principle of autonomy is problematic regarding the future of the embryo who lacks the ability to self-advocate but will develop this defining human capacity in time. Recent experiments explore the use of clustered regularly interspaced short palindromic repeats /Cas9 for germline engineering in the embryo, which alters future generations. The embryo’s inability to express an autonomous decision is an obvious bioethical challenge of germline engineering. The philosopher Joel Feinberg acknowledged that autonomy is developing in children. He advocated that (...) to reserve this future autonomy, parents should be guided to make ethical decisions that provide children with open futures. Here, Feinberg’s 1980 open future theory is extended to the human embryo in the context of CRISPR germline engineering. Although the embryo does not possess the autonomous decision-making capacity at the time of germline engineering, the parental decision to permanently change the unique genetic fabric of the embryo and subsequent generations disregards future autonomy. Therefore, germline engineering in many instances is objectionable considering Feinberg’s open future theory. (shrink)

This study examined whether the stability of highly relevant animate and inanimate information predicted encoding. Participants viewed audiovisual media and completed a change detection task of screenshots taken from the viewing session. The screenshots were either left as originally viewed or a factor was altered. The factors were all motivationally and story relevant. Half were part of an animal and half were part of other environmental information. This was crossed with whether the information was stable or fleeting in the scene. (...) Changes to animals were more recognized than inanimate information. Changes to fleeting inanimate information were better recognized than changes to stable inanimate information. These findings indicate potential for relevant change in environmental threat and opportunity is adaptively significant and likely to increase attention and encoding across animate and inanimate categories of information. (shrink)

The evidence of high cognitive abilities in cetaceans does not stand up to close scrutiny under the standards established by laboratory researchers. This is likely to lead to a sterile debate between laboratory and field researchers unless fresh ways of taking the debate forward are found. A few suggestions as to how to do this are proposed.

The possible integration of genomic sequencing (including whole‐genome and whole‐exome sequencing) into the three contexts addressed in this special report—state‐mandated screening programs, clinical care, and direct‐to‐consumer services—raises related but distinct legal issues. This essay will outline the legal issues surrounding the integration of genomic sequencing into state newborn screening programs, parental rights to refuse and access sequencing for their newborns in clinical and direct‐to‐consumer care, and privacy‐related legal issues attending the use of sequencing in newborns.

Animal rights organizations in the United States are predominantly female and middle class. What are the implications of the composition of these groups for animal rights activists' abilities to achieve their goals? In this article, the author examines the role of class and gender in the outcomes of an anti-hunting campaign and an anti-circus campaign waged by one animal rights organization in the Seattle area. The article shows that hunters make classed and gendered attributions about the activists, whereas circus patrons (...) do not view activists in terms of these statuses and end up taking their demands more seriously. It is suggested that an “identity interaction” between the activists' class and gender identity and that of their targets helps to explain these different reactions. The analysis also highlights the role of emotion in social movements, especially the ways in which targets perceive and react to activists' emotional displays. (shrink)

Are the places that superhuman beings purportedly act and dwell randomly or arbitrarily distributed? Inspired by theoretical work in cognitive science of religion, descriptions of superhuman beings were solicited from informants in 20 countries on five continents, resulting in 108 usable descriptions, including information about these beings’ properties, their dwelling location, and whether they were the target of rituals. Whether superhuman beings are the subject of religious and ritual practices appeared to co-vary in relation to both features of physical geography (...) and cognitive factors. Good gods were more likely the focus of religious practices than evil gods, and where the gods are thought to dwell mattered. If either the being was thought to dwell in a dangerous place or a resource rich place, it was more likely to have practices directed at it. (shrink)

In most U.S. jurisdictions, clinicians providing informal “curbside” consults are protected from medical malpractice liability due to the absence of a doctor-patient relationship. A recent Minnesota Supreme Court case, Warren v. Dinter, offers the opportunity to reassess whether the majority rule is truly serving the best interests of patients.

This book review essay discusses Birth Rights and Wrongs: How Medicine and Technology Are Remaking Reproduction and the Law (2019), by Dov Fox.

I joined The Hastings Center this past summer, after graduating from Duke University, where I researched advancements in neuroscience and genomics and their import for law, ethics, and policy. This research required, to an extent, faith in the idea that researchers can identify pathways by which genes combine with epigenetic and environmental factors to affect neuronal activity and influence behaviors. Throughout my first months here, I have puzzled over broad critiques of “genomic hype” in recent literature, which clash with the (...) optimistic rhetoric found in the Human Genome Project and the Precision Medicine Initiative. (shrink)

This article seeks to document the latest danger in the opioid crisis: fentanyl and related synthetic opioids. Fifty times more potent than pure heroin, cheaper to manufacture in laboratories worldwide, and easily distributed by mail and couriers, fentanyl is flooding the illicit opioid markets throughout the country.

This article examines how federal law enforcement has responded to the opioid epidemic nationally and in a variety of locales. We focus in depth on two initiatives, including prosecution in opioid-death cases, undertaken by the U.S. Attorney's Office in Connecticut.

We agree with Ramsey et al. regarding the need for new methods and concepts in the study of innovation, and welcome their initiative, but are concerned that their operationalization is over-reliant on subjective judgements.

PurposeThe purpose of this paper is to discuss whether existing organisations that seek to integrate a range of stakeholders in the field of information and communication technology and ageing are adequately meeting the needs of each of these stakeholder groups, and to determine whether a new, or re‐organised, mechanism is needed to better meet the needs of stakeholders.Design/methodology/approachThe authors identify, describe, assess and compare the adequacy of various candidate multi‐stakeholder mechanisms in order to improve stakeholder co‐operation.FindingsThe authors' principal finding is (...) that the stakeholder co‐ordination mechanisms discussed in this paper are not adequate to foster e‐inclusion co‐operation, co‐ordination and collaboration among all different types of stakeholders.Practical implicationsThis analysis offers direction in how a new organisation, or the expansion of an existing mechanism, could ensure that currently un‐met needs are addressed. The strengths and weaknesses of the stakeholder co‐ordination mechanisms discussed here demonstrate that some organisational types are better for performing certain tasks and for integrating particular types of stakeholder. Thus, a federated, multi‐dimensional organisation offers one possibility for addressing the needs of all different types of stakeholders.Originality/valueThis paper provides an avenue of response to various calls for closer stakeholder collaboration by the European Commission and other stakeholders, in order to improve the quality of life for older persons and to meet European social objectives. (shrink)

If “Big Gods” evolved in part because of their ability to morally regulate groups of people who cannot count on kin or reciprocal altruism to get along, then powerful gods would tend to be good gods. If the mechanism for this cooperation is some kind of fear of supernatural punishment, then we may expect that mighty gods tend to be punishing gods. The present study is a statistical analysis of superhuman being concepts from 20 countries on five continents to explore (...) whether the goodness of a god is related to its mightiness. Gods that looked more like the God of classical theism and gods that were low in anthropomorphism were more likely to be regarded as morally good and to be the target of religious practices. Mighty gods were not, however, especially likely to punish or to be a “high god.”. (shrink)

In a project The Hastings Center is now running on the future of prenatal testing, we are encountering clear examples, both in established law and in the practices of individual providers, of failures to respect women's reproductive autonomy: when testing is not offered to certain demographics of women, for instance, or when the choices of women to terminate or continue pregnancies are prohibited or otherwise not supported. But this project also raises puzzles for reproductive autonomy. We have learned that some (...) clinicians and patients do not discuss the fact that prenatal testing can lead to a decision about whether to terminate a pregnancy—they just don't talk about it. And while the decision whether to agree to prenatal screening and diagnostic testing is to be made with women's free and informed consent, many screening tests have been routinized in such a way that some women do not even recall agreeing to testing, while others feel that agreeing to testing is what their clinicians expect of them or that the testing is necessary to protect themselves and their families from the significant financial hardship of raising a child with a disability. In the face of these pressures, can one really say that women are freely choosing to undergo testing or are freely choosing to continue or terminate a pregnancy following receipt of test results? The reality of these pressures is requiring us to consider expanding the scope of our investigation beyond the clinical encounter to the broader context—to think harder about what reproductive autonomy means and how best to enhance it. (shrink)

Respect for autonomy is a central value in reproductive ethics, but it can be a challenge to fulfill and is sometimes an outright puzzle to understand. If a woman requests the transfer of two, three, or four embryos during fertility treatment, is that request truly autonomous, and do clinicians disrespect her if they question that decision or refuse to carry it out? Add a commitment to justice to the mix, and the challenge can become more complex still. Is it unfair (...) for insurance policies to exclude from coverage the costs of giving fertility to those who lack it or restoring fertility in those who have lost it? What does “just reproduction” look like in the face of multifarious understandings of both justice and autonomy and in light of increasingly complex and costly reproductive technologies? In today's dialogue about reproduction, medicine, and ethics in the United States, old ethical issues—such as whether women ought to be allowed to access pregnancy termination—are more contested than they have been in decades, while new technologies—like those used to edit the genes of human embryos—suggest that our species could face unprecedented questions about who should exist. As we considered the discussions accompanying these issues and contemplated a special report responding to them, we found ourselves consistently circling back to two ethical commitments: respect for autonomy and the pursuit of justice. As one of the nine essays in this collection asks, why should certain women receive help to establish a pregnancy while others are thrown in jail when they miscarry or their child is stillborn? Respect for autonomy is required where individuals have the ability to make fully informed and voluntary choices. Yet does respecting autonomy require acceding to all the choices of patients or consumers of medical care? We consider these and related questions in this special report from the Hastings Center Report. (shrink)

I am pleased to introduce this Symposium Edition of The Journal of Law, Medicine & Ethics, which covers a wide variety of issues central to transgender health equity, including Dr. Jamison Green’s recent history of the impact of health policy on transgender communities, Dr. M. Killian Kinney, Ms. Taylor Pearson, and Prof. Julie Ralston Aoki’s transgender equity tool for legal policy analysis, and Prof. Elizabeth Kukura’s analysis of issues facing transgender, non-binary, and gender expansive people during pregnancy and childbirth.