The "grassroots turn" in bioethical discussions about justice in allocation of health care resources has attracted a great deal of support; in the absence of a convincing theory of justice in rationing, democratic decisionmaking concerning priority setting emerges with a kind of inevitability. Yet there remain suspicions about this approach – most importantly, worries about the socially corrosive impact of explicit, public decisionmaking that in effect sets a price on the lives of persons. These worries have been (...) quieted, particularly by the work of Leonard Fleck, but not altogether stilled. I explore more sympathetically the ideals to which concerns about public rationing somewhat dimly respond, and suggest constraints on priority setting discussions which might accommodate those ideals rather better. Keywords: "grassroots" decisionmaking, publicity principle, pricing life, rationing health care CiteULike Connotea Del.icio.us What's this? (shrink)

In Grassroots Spirituality, Robert Forman documents an important and profound shift in the nature of spirituality in North America, that strongly influences Europe as well. His exciting survey graphically illustrates the possibility of this "grassroots" movement shaping a creative era that responds to new and old needs of religiosity.

Local sustainable food systems have captured the popular imagination as a progressive, if not radical, pillar of a sustainable food future. Yet these grassroots innovations are embedded in a dominant food regime that reflects productivist, industrial, and neoliberal policies and institutions. Understanding the relationship between these emerging grassroots efforts and the dominant food regime is of central importance in any transition to a more sustainable food system. In this study, we examine the encounters of direct farm marketers with (...) food safety regulations and other government policies and the role of this interface in shaping the potential of local food in a wider transition to sustainable agri-food systems. This mixed methods research involved interview and survey data with farmers and ranchers in both the USA and Canada and an in-depth case study in the province of Manitoba. We identified four distinct types of interactions between government and farmers: containing, coopting, contesting, and collaborating. The inconsistent enforcement of food safety regulations is found to contain progressive efforts to change food systems. While government support programs for local food were helpful in some regards, they were often considered to be inadequate or inappropriate and thus served to coopt discourse and practice by primarily supporting initiatives that conform to more mainstream approaches. Farmers and other grassroots actors contested these food safety regulations and inadequate government support programs through both individual and collective action. Finally, farmers found ways to collaborate with governments to work towards mutually defined solutions. While containing and coopting reflect technologies of governmentality that reinforce the status quo, both collaborating and contesting reflect opportunities to affect or even transform the dominant regime by engaging in alternative economic activities as part of the ‘politics of possibility’. Developing a better understanding of the nature of these interactions will help grassroots movements to create effective strategies for achieving more sustainable and just food systems. (shrink)

Local sustainable food systems have captured the popular imagination as a progressive, if not radical, pillar of a sustainable food future. Yet these grassroots innovations are embedded in a dominant food regime that reflects productivist, industrial, and neoliberal policies and institutions. Understanding the relationship between these emerging grassroots efforts and the dominant food regime is of central importance in any transition to a more sustainable food system. In this study, we examine the encounters of direct farm marketers with (...) food safety regulations and other government policies and the role of this interface in shaping the potential of local food in a wider transition to sustainable agri-food systems. This mixed methods research involved interview and survey data with farmers and ranchers in both the USA and Canada and an in-depth case study in the province of Manitoba. We identified four distinct types of interactions between government and farmers: containing, coopting, contesting, and collaborating. The inconsistent enforcement of food safety regulations is found to contain progressive efforts to change food systems. While government support programs for local food were helpful in some regards, they were often considered to be inadequate or inappropriate and thus served to coopt discourse and practice by primarily supporting initiatives that conform to more mainstream approaches. Farmers and other grassroots actors contested these food safety regulations and inadequate government support programs through both individual and collective action. Finally, farmers found ways to collaborate with governments to work towards mutually defined solutions. While containing and coopting reflect technologies of governmentality that reinforce the status quo, both collaborating and contesting reflect opportunities to affect or even transform the dominant regime by engaging in alternative economic activities as part of the ‘politics of possibility’. Developing a better understanding of the nature of these interactions will help grassroots movements to create effective strategies for achieving more sustainable and just food systems. (shrink)

In this paper, we document the counter-data action and data activism of a grassroots affordable housing advocacy group in Atlanta. Our observation and insight into these data activities and strategies are achieved through ethnographic and engaged research and participatory design. We find that counter-data action through community-collected data is rooted in a legacy of Atlanta’s black activism and black scholarship; that this data activism enabled resource mobilization and critical conscious making; and that design and media production are essential post (...) counter-data action activities in data activism. Based on these findings, we urge the field of open government data to broaden their concept of social impact of data to include the use data to mobilize resources within oppressed communities not to influence policy and government but to build capacities within community in order to transform, not join, political structures. We also advocate that scholars within the fields of open government data, critical data studies, and data activism recognize the legacy and historic practice of data activism by black communities working towards social change. (shrink)

Parental activism in education reform, while often portrayed as an exemplary manifestation of participatory democracy and grassroots action in response to entrenched corporate and bureaucratic interests, is in fact carefully cultivated and channeled through strategic networks of philanthropic funding and knowledge. This paper argues that these networks are characteristic of a contemporary form of neoliberal governance in which the philanthropic “gift” both obligates its recipients to participate in the ideological projects of the givers and obscures the incursion of market (...) principles into education behind a veneer of progressive activism. Drawing on archival research as well as personal interviews with Seattle-based reform advocates, representatives of philanthropic organizations, and school administrators, the paper points to the need to critically evaluate the “roots” in grassroots movements and trace their connections to larger institutions and agendas. (shrink)

A New York court recently struck down state Office of Mental Health regulations governing research involving subjects with impaired decisionmaking capacity. The court held that neither incapacitated adults nor minors could participate in any research protocol that contained a nontherapeutic element, irrespective of possible benefits to the subject or the importance of the knowledge to be gained. Although the decision rested on a technical point of law and dealt only with psychiatric research, the court's holding has significantly broader implications.

Family members are widely believed to be the best decisionmakers for those with brain injuries, but the rehabilitation process does not in fact give them that authority.

This book examines Mohism as a movement in early China. To analyze how the Mohists pursued power, the author analyzes nonviolence as a goal and strategy of the Mohist movement, the Mohists' creation of strategic knowledge, and their quest for a personhood that made their activism possible.

Ideological positions are often rooted in binary terms. If a group or entity holds one ideological position then it seems reasonable that they cannot hold the opposing position. This has resulted in a division between corporate public relations and grassroots movements who oppose practices they believe negatively impact society and the environment. However, what happens when corporations practice ideologically justified business decisions that were called upon by grassroots movements for change? What happens to suppliers and distributors who must (...) operate under the demands of changing manufacturing and consumerbehaviors? This paper examines the blending of corporate commercial practice with social and environmental ethos that works to form commercial grassroots activism to positively impact manufacturing and purchasing behaviors. (shrink)

BiDil, a heart failure drug for African Americans, emerged five years ago as the first FDA approved drug targeted at a specific racial group. While critical scholarship and the popular media have meticulously detailed the history of BiDil from its inauspicious beginnings as a generic combination drug for the general population to its dramatic resuscitation as a racial medicine, the enthusiastic support shown by some African American interest groups has been too little understood, as has their argument that BiDil was (...) an important response to race-based health disparities. In this essay, we show how the drugmaker, NitroMed, used the support it had solicited from black advocacy groups and community members to market BiDil as a unique “grassroots” pharmaceutical to the African American community. We go on to situate BiDil, which relied on a domestic, U.S.-centered conception of race, within the context of the global nature of both race and health disparities. Ironically, the grassroots angle of the BiDil case ultimately obscured the global crisis in health disparities. Furthermore, we argue that the grassroots model initiated by NitroMed should be taken note of, as it marks a potential avenue for the marketing of other drugs in the future. (shrink)

The article is focused on social stigma in informal social control of drug abuse. Social stigma is considered as the three related components: negative stereotypes, prejudices, and discrimination. The discrimination as a behavioral result of stigma manifests itself in capability deprivation, compulsion and segregation. According to this scheme, informal social control is shown on the example of the four Russian grassroots initiatives, which can be observed at the present time. They are implementing various approaches. As empirical data we used (...) self-posted materials of these initiatives on the Internet. The textual data was analyzed by combination of content analysis and critical discourse analysis. We conclude that the spectrum of social stigma in sphere of informal control is quite wide: from its correction to its significant gain. And the gain of social stigma could not be marked as negative unambiguously. In case of some grassroots initiatives the effectiveness and potency of social control may be also based on strengthening the social stigma of people who use alcohol and drugs. The last conclusion is connected with some data from other countries. (shrink)

The increased recognition and reported prevalence of autism spectrum disorders combined with the associated societal and clinical impact call for a broad grassroots community-based dialogue on treatment related ethical and social issues. In these Stony Brook Guidelines, which were developed during a full year of community dialogue with affected individuals, families, and professionals in the field, we identify and discuss topics of paramount concern to the ASD constituency: treatment goals and happiness, distributive justice, managing the desperate hopes for a (...) cure, sibling responsibilities, intimacy and sex, diagnostic ethics, and research ethics. The members of the dialogue core committee included doctors, ethicists, administrators, social workers, ministers, disability experts, and many family members of individuals with autism who were especially engaged in community activities on behalf of their constituency, including siblings, parents, and grandparents. Our guidelines are not based on “top-down” imposition of professional expertise, but rather on a “bottom-up” grass roots attention to the voices of affected individuals and families speaking from experience. These guidelines can inform clinical practice, but they also are meaningful for the wider social conversation emerging over the treatment of individuals with ASD. (shrink)

This CQ department is dedicated to bringing noted bioethicsts together in order to debate some of the most perplexing contemporary bioethics issues. You are encouraged to contact department editor, D. Micah Hester, UAMS/Humanities, 4301 W. Markham St. #646, Little Rock, AR 72205, with any suggestions for debate topics and interlocutors you would like to see published herein.

This paper evaluates Sara Goering’s recent attempt to use the Rawlsian notion of the veil of ignorance as a tool for distinguishing permissible from impermissible forms of genetic engineering. I argue that her article fails due to a failure to include vital contextual information in the right way.

Fringe stakeholders with limited resources, such as grassroots organizations (GROs), are often ignored in business and society literature. We develop a conceptual framework and a set of propositions detailing how GROs strategically gain legitimacy and influence over time. We argue that GROs encounter specific paradoxes over the emergence, development, and resolution of an issue, and they address these paradoxes using cognitive, moral, and pragmatic legitimacy strategies. While cognitive and moral strategies tend to be used consistently, the flexible and paradoxical (...) use of pragmatic strategies has important consequences, both for GROs’ legitimacy and for their potential influence over powerful organizations associated with them. We enrich our framework with the help of two illustrative cases and discuss the implications of the framework for GROs’ legitimacy strategies in business and society literature. (shrink)

One of the most challenging and rewarding roles for in-house hospital attorneys is serving as a member of their hospital’s Bioethics Committee. As a member of the Committee, an attorney assists in developing institutional ethics policies and guidelines, and also participates in ethics consultations involving disputes about patient care. Institutions such as the Author’s employer, Texas Children’s Hospital, promote open and honest communications between members of a patient’s health care team and the patient’s parents and family; however, when communications break (...) down, the Committee’s goal is to provide an objective forum where disputes can be discussed and hopefully resolved in a professional, ethical manner. (shrink)

Canadian ethicists have a long legacy of leadership in advocating for standards and quality in healthcare ethics. Continuing this tradition, a grassroots organization of practicing healthcare ethicists (PHEs) concerned about the lack of standardization in the field recently formed to explore potential options related to professionalization. This group calls itself “practicing healthcare ethicists exploring professionalization” (PHEEP). This paper provides a description of the process by which PHEEP has begun to engage the Canadian PHE community in the development of practice (...) standards and related projects. By making our process and its ethical and cultural underpinnings transparent, we hope to prompt PHEs around the world to reflect on the importance of context, process and principles (not just outcomes) in the exploration of and possible movement towards professionalization. By sharing some of our key successes and challenges, we also hope to inspire our colleagues to recognize the value in developing practice standards and to contribute to this endeavor. (shrink)

Patients with disorders of consciousness after severe brain injury need surrogate decision makers to guide treatment decisions on their behalf. Formal guidelines for surrogate decisionmaking generally instruct decision makers to first appeal to a patient’s written advance directive, followed by making a substituted judgment of what the patient would have chosen, and lastly, to make decisions according to what seems to be in the patient’s best medical interests. Substituted judgment is preferable because it is taken to preserve patient autonomy, (...) by using a patient’s past wishes and values to reconstruct what they would have chosen for themselves. In this paper, the author argues that for a certain population of patients, the standard interpretation of substituted judgment cannot ensure the preservation of patient autonomy. Patients with “covert awareness” may continue to have values and an authentic sense of self, which may differ from their past values and wishes. Accordingly, surrogate decision makers should make decisions based on how the patient is likely to experience their condition in the present, rather than their past wishes and values. (shrink)

Since the first phase of the formal effort to sequence the human genome, geneticists, social scientists and other scholars of race and ethnicity have warned that new genetic technologies and knowledge could have negative social effects, from biologizing racial and ethnic categories to the emergence of dangerous forms of genetic discrimination. Early on in the Human Genome Project, population geneticists like Luigi Luca Cavalli-Sforza enthusiastically advocated for the collection of DNA samples from global indigenous populations in order to track the (...) history of human ancestry, migration, and languages, while social scientists like Troy Duster insisted that the new genetics was in danger of ushering in insidious practices of eugenics. The Human Genome Diversity Project's 1991 proposal to archive human genetic variation around the world quickly came under intense scrutiny by indigenous peoples and advocacy groups who worried that such measures could exploit indigenous groups as research populations and even resurrect racist taxonomies from the nineteenth century. (shrink)

In the age of artificial intelligence, the common interest in human autonomy is experiencing a revival. Autonomy has formerly and mostly been investigated from a theoretical scientific perspective, in which scholars from various disciplines have linked autonomy with the concepts of dignity, independence from others, morality, self-awareness, and unconventionality. In a series of three semi-qualitative, preregistered online studies, we investigated laypersons' understanding of autonomy with a bottom-up procedure to find out how far lay intuition is consistent with scientific theory. First, (...) in Study 1, participants provided us with at least three and up to 10 examples of autonomous behaviors, for a total of 807 meaningful examples. With the help of blinded research assistants, we sorted the obtained examples into categories, from which we generated 34 representative items for the following studies. Next, in Study 2, we asked a new sample of participants to rate the degree of autonomy reflected in each of these 34 items. Last, we presented the five highest-rated and the five lowest-rated items to the participants of Study 3, whom we asked to evaluate how strongly they represented the components of autonomy: dignity, independence from others, morality, self-awareness, and unconventionality. We identified that dignity, independence from others, morality, and self-awareness significantly distinguished between high- and low-autonomy items, implying that high autonomy items were rated higher on dignity, independence from others, morality, and self-awareness than low autonomy items, but unconventionality did not. Our findings contribute to both our understanding of autonomous behaviors and connecting lay intuition with scientific theory. (shrink)

Should the authority to make treatment decisions be extended to the competent patient's family? Neither arguments from fairness nor communitarian concerns justify such an infringement on patient autonomy.

As part of an effort to look at for bioethicists interested in clinical decisionmaking, Erik Parens, the editor of this special section, asked us to look at social class. When we began our research for this paper, we were surprised to find that although bioethicists have written much on social class and such macrolevel issues as access to healthcare and the distribution of scarce resources, and have paid some attention to the effects of class on patient-provider relationships, bioethicists have (...) written little specifically that looks at the implications of social class for medical decisions in individual cases. (shrink)

The argument for children's rights in health care has been long in the making. The success of this position is reflected in the 1995 American Academy of Pediatrics recommendations for the role of children in health care decisionmaking, which suggest that children be given greater voice as they mature. But there are good moral and practical reasons for exercising caution in these health care situations, especially when the child and parents disagree. Parents need the moral and legal space within (...) which to make decisions that will facilitate their child's long‐term autonomy, not only her present‐day autonomy. Moreover, third‐party intrusion, by physicians or the state, should be resisted unless negligent and abusive decisions are in the making. (shrink)

Mackenzie Graham has made an important contribution to the literature on decisionmaking for patients with disorders of consciousness. He argues, and I agree, that decisions for unresponsive patients who are known to retain some degree of covert awareness ought to focus on current interests, since such patients likely retain the kinds of mental capacities that in ordinary life command our current respect and attention. If he is right, then it is not appropriate to make decisions for such patients by (...) appealing to the values they had in the past, either the values expressed in an advance directive or the values recalled by a surrogate. There are two things I wish to add to the discussion. My first point is somewhat critical, for although I agree with his general conclusion about how, ideally, such decisions should be approached, I remain skeptical about whether his conclusion offers decisionmakers real practical help. The problem with these cases is that the evidence we have about the nature of the patient’s current interests is minimal or nonexistent. However—and this is important—Graham’s conclusion will be extremely relevant if in the future, our ability to communicate with such patients improves, as I hope it will. This leads to my second point. Graham’s conclusion illustrates a more general problem with our standard framework for decisionmaking for previously competent patients, a problem that has not been adequately recognized. So, in what follows, I explain the problem I see and offer some brief thoughts about solutions. (shrink)

This essay has two aims: The first is to demonstrate that the basic conceptual framework of principal/agent theory can be fruitfully applied to decisionmaking in health care and in such a way as to facilitate the more efficient pursuit of the moral values of individual well-being and autonomy which health care is supposed to promote. The second is to show that this application results in an enrichment of principal/agent theory itself, by removing some of the limitations on the theory (...) that are valid only for the more exclusively self-interested, commercial contexts to which the theory is usually applied. (shrink)

Women’s health activists laid the groundwork for passage of the law that created the U.S. Food and Drug Administration in 1906. The pharmaceutical and food industries fought regulatory reforms then and continue to do so now. We examine public health activism in the Progressive Era, the postwar era and the present day. The women’s health movement began in the 1960s, and criticized both the pharmaceutical industry and the medical establishment. In the 1990s, patient advocacy groups began accepting industry funds; thousands (...) of commercially-funded groups now dominate the advocacy landscape. As pharma funding became normalized, concerns arose regarding a) the lack of transparency and public accountability regarding funding, b) the distortion of groups’ agendas, and c) the ability of pharma-funded groups to dominate the discourse and override less well-resourced patient and health advocacy groups. Although industry-funded groups argue that funding allows them to provide useful services, the trade-off in health risks, exorbitant prices and distorted information is far too high. Sincerity is beside the point; patients and the industry have differing interests when it comes to drug safety and efficacy, drug information and drug prices. A growing resistance movement is asserting the values of its activist predecessors and opposing the prevailing culture of pharma-funded advocacy. (shrink)

Because of the emphasis on individualism and self-governance, medical interventions and medical research in Western nations are preceded by attempts to obtain informed consent from the individual patient or potential research subject. Individual autonomy expresses our belief that persons are ends in themselves and not merely instrumentalities to achieve the goals of others. By respecting the patient or potential research subject in the context of medical decisionmaking, we acknowledge that these individuals are moral agents. Thus, individual autonomy is an (...) important feature of morality as it is practiced in the West. However, there are at least two circumstances in which individual autonomy appears to be threatened. One is embodied in nonwestern societies that favor collective decisionmaking over that of the individual. The other is related to the need for family histories and family testing to determine the susceptibility of family members to some genetically based disease. In both cases, individual judgment appears to be made subordinate to collective judgment. (shrink)