Erika Blacksher

Place-focused physical activity research, human agency, and social justice in public health: Taking agency seriously in studies of the built environment

Built environment characteristics have been linked to health outcomes and health disparities. However, the effects of an environment on behavior may depend on human perception, interpretation, motivation, and other forms of human agency. We draw on epidemiological and ethical concepts to articulate a critique of research on the built environment and physical activity. We identify problematic assumptions and enumerate both scientific and ethical reasons to incorporate subjective perspectives and public engagement strategies into built environment research and interventions. We maintain that taking agency seriously is essential to the pursuit of health equity and the broader demands of social justice in public health, an important consideration as studies of the built environment and physical activity increasingly focus on socially disadvantaged communities. Attention to how people understand their environment and navigate competing demands can improve the scientific value of ongoing efforts to promote active living and health, while also better fulfilling our ethical obligations to the individuals and communities whose health we strive to protect.

What Is Public Deliberation

March-April 2012 The idea that ordinary people should have an opportunity to participate in important policy matters is as old as democracy itself. Today, this idea prevails in contemporary democratic theory and has made significant inroads in public policy. Deliberations to address social challenges in health, science, education, and the environment are proliferating around the globe. Deliberative processes have been used, for example, to strengthen local government and civil society in Bolivia; promote growth and sustainability in Perth, Australia; and advise health ministries in Canada on new health technologies. Yet despite the widespread appeal of and volumes of ink devoted to this idea, there is no settled account of what constitutes public deliberation in theory or in practice. Deliberative processes go by a variety of names (deliberative democracy, deliberative politics, participatory governance) and take diverse forms (citizen juries, national issue forums, deliberative opinion polls, participatory budgeting). The purposes, processes, and products of deliberation are all subject to debate. Here we propose Essays

Children's Health Inequalities: Ethical and Political Challenges to Seeking Social Justice

Childhood obesity may have severe long-term consequences for health—indeed, for the overall course of a persons life. Do these harms amount to a problem of social justice? And if so, what should be done about it? Parents are usually granted considerable leeway to make decisions that affect their childrens health. Social and moral theory has often overlooked the family, however, leaving us with an inadequate understanding of parental autonomy and of how social policy may influence it.

Genomics, Health Disparities, and Missed Opportunities for the Nation’s Research Agenda

The completion of the Human Genome Project occurred at a time of increasing public attention to health disparities. In 2004, Sankar and colleagues1 suggested that this coincidental timing resulted in an inappropriate emphasis on the contribution of genomics to health disparities, conflating racial patterns of disease with genetic ancestry, and distracting attention from the large and compelling body of scientific evidence pointing to social determinants of health disparities.2 For example, genomic research has emphasized discovery of genetic contributors to diabetes risk, but the recent increase in the prevalence of obesity and type 2 diabetes, which disproportionately affects minority populations, cannot be attributed to genetic changes and rather reflects social forces affecting diet, food access, and patterns in physical activity. The introduction of new genomic health technologies could also exacerbate disparities in access to high-quality health care, if specific genomic testing improved health and was only available to those who were affluent. Nonetheless, the claim persists that genomic research can reduce health disparities—if only participation by minority populations in genomic research could be increased.

Shrinking Poor White Life Spans: Class, Race, and Health Justice

An absolute decline in US life expectancy in low education whites has alarmed policy makers and attracted media attention. Depending on which studies are correct, low education white women have lost between 3 and 5 years of lifespan; men, between 6 months and 3 years. Although absolute declines in life expectancy are relatively rare, some commentators see the public alarm as reflecting a racist concern for white lives over black ones. How ought we ethically to evaluate this lifespan contraction in low education whites? Should we care, or is it racist to care? Does it constitute an injustice or reflect justice being done? I argue that the lifespan contraction in low education whites violates key normative criteria used to make determinations of health justice, and that these judgments do not vitiate concerns about racism. I conclude with reflections on US population health policy and building an inclusive health equity movement.

Healthcare Disparities: The Salience of Social Class

Empirical evidence demonstrates that minority and marginalized populations receive less and lower quality healthcare than more advantaged groups. Ethical analyses of these disparities explain their injustice. That disparities exist and constitute a moral wrong are uncontroversial views. Less clear are the exact causes of healthcare disparities. Thanks go to several reviewers who read and commented on earlier drafts, including John Stone, John Arras, Jay Baruch, Terry Rosell, and an anonymous CQ reviewer.

Conversations about Community-Based Participatory Research and Trust: "We Are Explorers Together"

Abstract:Background: This paper describes a study circle and a series of conversations with a community partner that were part of a project that grew out of a partnership between Native People for Cancer Control, a research program at the University of Washington, and five tribes in Washington, Idaho, and Montana.Methods: Researchers undertook a study circle to build bioethics capacity and, specifically, to better understand the values that should guide community-based participatory research (CBPR).Results: Study circle members identified five action guiding principles for CBPR: respect tribal sovereignty, promote transparency, hear community priorities, learn from each other, and take collective action. This activity led to a series of conversations between researchers and the chair of Shoalwater Bay Tribe, Charlene Nelson. Nelson suggests the metaphor of “exploration” as a way to think about what good CBPR looks like. Exploration reframes the research enterprise, from a systematic scientific inquiry conducted by academic investigators to a less predictable activity that reaches into the uncontrolled and unknown. We used this metaphor to explore three features of CBPR we believe to be essential to building trust: ongoing commitment and time, direct collaboration with community members and new learning for all involved, and candid and cautious action.Conclusions: The CBPR literature underscores many of these same points; however, we found the metaphorical language offered by Nelson enriched their meaning and deepened study circle members’ appreciation of them.

Clinical Genetic Testing for APOL1 : Are we There Yet?

End-stage renal disease (ESRD) disproportionately affects African Americans, who are two to four times more likely than European Americans to develop ESRD. Two independent variants of the apolipoprotein L1 (APOL1) gene, G1 and G2, have been associated with a 7- to 10-fold greater risk of developing nondiabetic ESRD in African Americans. Those who inherit two risk variants (G1/G1, G2/G2, or G1/G2) are also more likely to develop ESRD at a younger age and to have progression of chronic kidney disease. Currently, it is not known what proportion of persons with high-risk genotypes will develop ESRD in the general population, the exact mechanism of injury for APOL1-related risk, its relation to environmental exposures, or whether patients with comorbid conditions are more likely to develop ESRD. To address the above uncertainties, research that includes assessment of APOL1 status is needed before guidelines for general testing can be endorsed. Currently, APOL1 testing has been proposed as part of kidney transplant protocols both for living donors and recipients. However, because of uncertainties regarding the clinical implications of APOL1 variants, testing could generate confusion, anxiety, or stigma. Multiple forms of evidence, including the views of community members, are needed to support responsible approaches to providing information about APOL1 status as part of clinical care or in population screening. Informed consent with subsequent counseling regarding the risks and benefits of APOL1 testing should be considered for patients at high risk.

Finding a Seat at the Table Together: Recommendations for Improving Collaboration between Social Work and Bioethics

Social work and bioethics are fields deeply committed to cross-disciplinary collaboration to do their respective work. While scholars and practitioners from both fields share a commitment to social justice and to respecting the dignity, integrity and the worth of all persons, the overlap between the fields, including shared values, has received little attention. The purpose of this article is to describe the ways in which greater collaboration between the two fields can broaden their scope, enrich their scholarship, and better ground their practice. We describe the potential for realizing such benefits in two areas - health care ethics consultation and social inequalities in health - arguing that the fields both complement and challenge one another, making them ideal partners for the interdisciplinary inquiry and problem-solving so often called for today in health and health care.

The ethics of managed care: report on a Congress of Clinical Societies.

n October 1996, the Anierican Gcriatrics Society and the I Hastings Center convened a Congress of Clinical Societies to address the ethical issues raised by the advent of managed care. The fourth in a serics of conferences that began in 1987,1-3 this effort brought leading scholars in medical ethics, health policy, law, and medicine together with rcpresentatives of the managed care industry to discuss how the integrity of medical practicc could be maintaincd and strengthened in a capitated marketplace. Invited speakers were joined by representatives of major clinical societies (See Appendix for a listing of the represcnted clinical societies). The formal papers from the 1996 meeting are published in this issue of tlie journal. Too often in discussions about managed care, we romanticize thc past and demonize the present. Sentimentally, wc remember a physician’s care of patients as a page from Sinclair Lewis’ Arrowsmith. In the opening pages of that classic, we recall a general practitioner in his horse and buggy making a house-call to attend to the sick.4 Today, we might imagine a physician-administrator driving her Lexus to a managed care organization’s corporate headquarters to determine how disputed healthcare benefits might be adjudicated. The first image evokes nostalgia for simpler times when physicians practiced alone and had unquestioned clinical discretion. The second illustrates the growing corporatization of medical practice and the decline of professional autonomy. Today, forces external to the traditional doctorpatient relationship dictate how medicine is practiced and what care is received.