David R. Buchanan

Ethical Issues in Community-Based Participatory Research: Balancing Rigorous Research With Community Participation in Community Intervention Studies

Problem: Concerns have been raised that community participation might compromise scientific rigor in community-based participatory research (CBPR). Purpose: The purpose of this paper is to identify potential sources of tension between the values of scientific rigor and community participation in CBPR. Key Points: CBPR lies at the nexus of two major underlying ethical concerns—respect for community autonomy and the fair allocation of limited public resources—which have generated considerable controversy about appropriate criteria for evaluating CBPR grant proposals. The complexity of evaluating CBPR proposals is compounded by the multiple purposes that it serves: (1) an ethical function of demonstrating respect for community autonomy; (2) a research method for eliciting ideas for interventions to improve population Conclusions: Growing use of CBPR raises two new ethical issues that deserve greater public attention: first, the problem of securing informed consent and demonstrating respect for community autonomy when the locus of research shifts from the individual to community level; and second, fair distribution of scarce public resources when practical constraints make the most rigorous research designs for assessing the effects of community interventions virtually impossible. In light of recent federal initiatives, it is critical to achieve a common understanding of appropriate ethical and scientific standards for assessing the merits of CBPR.

The Health Impact of Supportive Housing for HIV-Positive Homeless Patients: A Randomized Controlled Trial

OBJECTIVES We assessed the health impact of a housing and case management program, the Chicago Housing for Health Partnership, for homeless people with HIV. METHODS HIV-positive homeless inpatients at a public hospital (n = 105) were randomized to usual care or permanent housing with intensive case management. The primary outcome was survival with intact immunity, defined as CD4 count > or = 200 and viral load < 100,000. Secondary outcomes were viral loads, undetectable viral loads, and CD4 counts. RESULTS Outcomes were available for 94 of 105 enrollees (90%). Of 54 intervention participants, 35 (65%) reached permanent housing in program housing agencies. After 1 year, 55% of the intervention and 34% of the usual care groups were alive and had intact immunity (P = .04). Seventeen intervention (36%) and 9 usual care (19%) participants had undetectable viral loads (P = .051). Median viral loads were 0.89 log lower in the intervention group (P = .03). There were no statistical differences in CD4 counts. CONCLUSIONS Homelessness is a strong predictor of poor health outcomes and complicates the medical management of HIV. This housing intervention improved the health of HIV-positive homeless people.

An Uneasy Alliance: Combining Qualitative and Quantitative Research Methods

The paper describes the difficulties encountered in trying to combine qualitative and quantitative research methods in a study of the relationship between moral reasoning and teenage drug use. Four problems that arose in the attempt to reduce qualitative data to a quantitative format are described. These problems are: (1) making analytic sense of singular responses; (2) a mistaken logical inference that demands that each pattern of judgment should have discrete behavioral indicators; (3) the construction and use of ideal types; and (4) making analytic sense of universal responses. The roots of these problems are then traced to the underlying philosophical premises that distinguish the qualitative and quantitative research paradigms. The implications of the different goals, assumptions, and standards of evaluation informing each of the respective methods for future research are discussed.

Perspective: A New Ethic for Health Promotion: Reflections on a Philosophy of Health Education for the 21st Century

This article describes two models for thinking about the purposes of health education—a medical model and an educationmodel—andtraces how concerns about the validity of research have driven preferencefor the medical model. In the medical model, the purpose of health education is to develop effective interventions that will prevent people from adopting unhealthy behaviors. Here, health educators are expected to replicate the methods identified by researchers to effect targeted changes in health behavior. The article then describes an alternative way of thinking about the purposes of health education. In pursuing a philosophy of education, the purpose of research and practice would be to clarify basic social values and to strengthen ones faculty for making value judgments. Practitioners here use research results as a stimulus for dialogue about the role of good health habits in living the kind of life that community members find most valuable.

Empirical Science Meets Moral Panic: An Analysis of the Politics of Needle Exchange

The paper presents an analysis of the policy advocacy strategies used by both proponents and opponents of needle exchange programs in the US, drawing on the analytic framework developed by Stone. Based on a case study of the politics of needle exchange in Massachusetts, we argue that proponents of needle exchange have relied almost exclusively on empirical scientific arguments to build their case, while opponents have generally resorted to normative ethical arguments. Since the frames of argument are unrelated, the two sides talk past one another, bypassing progress towards resolution or consensus. By failing to address the ethical concerns raised by opponents, public health advocates of needle exchange are losing the larger public debate. The paper concludes with specific recommendations for how public health advocates should respond to the normative dimensions of this public policy issue.

A public health perspective on research ethics

Ethical guidelines for conducting clinical trials have historically been based on a perceived therapeutic obligation to treat and benefit the patient-participants. The origins of this ethical framework can be traced to the Hippocratic oath originally written to guide doctors in caring for their patients, where the overriding moral obligation of doctors is strictly to do what is best for the individual patient, irrespective of other social considerations. In contrast, although medicine focuses on the health of the person, public health is concerned with the health of the entire population, and thus, public health ethics is founded on the societal responsibility to protect and promote the health of the population as a whole. From a public health perspective, research ethics should be guided by giving due consideration to the risks and benefits to society in addition to the individual research participants. On the basis of a duty to protect the population as a whole, a fiduciary obligation to realise the social value of the research and the moral responsibility to distribute the benefits and burdens of research fairly across society, how a public health perspective on research ethics results in fundamental re-assessments of the proper course of action for two salient topical issues in research ethics is shown: stopping trials early for reasons of efficacy and the conduct of research on less expensive yet less effective interventions.

Neighborhood differences in patterns of syringe access, use, and discard among injection drug users: Implications for HIV outreach and prevention education

The article presents results from the Syringe Access, Use, and Discard: Context in AIDS Risk research project comparing two neighborhoods by (1) socioeconomic and demographic characteristics; (2) patterns of syringe access, use, and discard; and (3) encounters with a local human immunodeficiency viruslacquired immunodeficiency syndrome (HIV/AIDS) outreach project targeted to injection drug users (IDUs). The results show that IDUs in more economically advantaged neighborhoods were more likely to acquire syringes from a single source (rather than multiple sources), more likely to inject alone in their own residence (rather than public injection locales), and more likely to dispose of syringes in private garbage cans rather alleys or dumpsters. These results are further associated with the likelihood of encountering street outreach workers, with IDUs in more affluent neighborboods much less likely to have any such contacts. Based on the different patterns of access, use, and discard evident in each neighborhood, the results indicate that different and more carefully tailored local outreach and prevention strategies are urgently needed.

Justice and Fairness in the Kennedy Krieger Institute Lead Paint Study: the Ethics of Public Health Research on Less Expensive, Less Effective Interventions

The Kennedy Krieger lead paint study stirred controversial questions about whether research designed to develop less expensive interventions that are not as effective as existing treatments can be ethically warranted. Critics questioned the social value of such research and alleged that it sanctions a double standard, exploits participants, and is complicit in perpetuating the social injustice. In response, we demonstrate the propriety of conducting research on interventions that can be extended to the population in need by stipulating the limited conditions in which it is ethically warranted and providing fair terms of participation. We contend that the failure to conduct such research causes greater harm, because it deprives disadvantaged populations of the benefits of imminent incremental improvements in their health conditions.

Two Models for Defining the Relationship between Theory and Practice in Nutrition Education: Is the Scientific Method Meeting Our Needs?

This article describes two models for linking theory and practice in nutrition education and traces how concerns about the validity of different types of research drive the choice of models. In the scientific model, theory is defined in terms of statements from which one can deduce hypotheses, which can then be tested in experimental research designs. In the scientific model, practitioners are expected to replicate the methods used by researchers to effect targeted changes in the dependent variable of interest, usually health or eating behaviors. The ethical and epistemological shortcomings of the scientific model are then examined. The report goes on to describe an alternative approach, termed the humanistic model. In the humanistic model, theory is defined in terms of statements that seek to clarify basic social values. In the humanistic model, practitioners use theory as a stimulus for dialogue about the role of eating habits in living the kind of life that community members find most valuable. Examples of humanistic research relevant to nutrition education are presented, and the limitations of establishing the certainty of claims made using humanistic criteria are discussed. The article concludes with a discussion of the implications of the humanistic model for professional preparation.

This is the Partnership for a Drug-Free America: Any Questions?

The paper examines the impact and possible unintended side effects of the privately sponsored Partnership for a Drug-Free America (PDFA) media campaign to reduce illicit drug abuse. The paper describes the history, goals, organization, production processes, and process and outcome evaluations of the PDFA advertising campaign. It also reviews major criticisms that have been leveled at the PDFA campaign, including its dissemination of false information, the narrow scope of its message, a number of unintended iatrogenic side-effects, potential conflicts of interest arising from the sources of its funding, and the agenda-setting function of the PDFA campaign in defining which drugs are dangerous and how the attendant problems should be addressed.