Kenneth A. Richman

Misbehaviors of Front-Line Research Personnel and the Integrity of Community-Based Research

There has been little empirical research into misconduct and misbehavior among community research workers who recruit and collect data in vulnerable and marginalized health populations and are also members of those same communities. We conducted qualitative interviews with community research workers and traditional research assistants to understand the context and consequences of misbehaviors that pose a threat to research ethics and data integrity. In our sample, more community research workers acknowledged engaging in research wrongdoing than did traditional research assistants. These behaviors were most prevalent among community research workers who were not well-integrated into the research team. We suggest best practices for investigators to promote an environment that supports research integrity in research projects that employ community research workers.

Ethical Dilemmas in Evaluations Using Indigenous Research Workers

This article addresses ethical dilemmas experienced by street-level research and evaluation workers recruiting and gathering data in community-based research projects. The authors focus on a subgroup of street-level research workers, whom they call research extenders (REs), employed because they share important characteristics with the target population. Like other street-level research workers, some REs are single role (only do research work) and others are dual role (do research work and provide services). They discuss relevant literature and findings from pilot focus groups exploring how REs understand responsible ethical conduct in their research work in the community. REs face ethical issues somewhat different from those of more traditional, non-indigenous street-level research workers. These issues increase social risk for study participants and could compromise the validity of data. Researchers need to be aware of and address the distinctive set of ethical issues raised by research and evaluation projects employing indigenous, street-level research workers.

Proximity, Ethical Dilemmas, and Community Research Workers

Background: In community-engaged research (CEnR), recruitment and data collection are often assigned to community research workers (CRWs). CRWs are hired because of close ties with target communities and presumed greater success recruiting and gathering data from marginalized populations. The value conflicts and personal stress facing CRWs have been described in the international context; however, less attention has been paid to these issues in U.S. settings. Methods: Qualitative interviews were held with CRWs about their experiences with CEnR. Interviews were transcribed and coded using Atlas.ti. Results: The data indicate that CRWs working in settings controlled by the participants, such as neighborhood streets and participant homes, are more likely to face conflicts between following the norms of research and meeting what they perceive to be their everyday obligations to help specific others (duties of relational ethics) and to keep themselves safe. This suggests that “physical proximity” (understood as degree of penetration into the physical domain of the target research community) is an important factor in the ethics of actual practice in CEnR. Conclusions: CRWs often experience ethical complexities that are simply not in the realm of experience of most higher level researchers. How CRWs navigate conflicting ethical obligations can affect the quality and usefulness of the data collected and thereby affect communities by influencing policies informed by these data. Soliciting the perspectives of CRWs early in the process of research design and development is recommended to maximize the benefits achievable through CEnR.

Ethics and Research with Undergraduates

Ethicists, researchers and policy makers have paid increasing attention to the ethical conduct of research, especially research involving human beings. Research performed with and by undergraduates poses a specific set of ethical challenges. These challenges are often overlooked by the research community because it is assumed that undergraduate student researchers do not have a significant impact on the research community and that their projects are not host to research posing important ethical issues. This paper identifies several features characteristic of research in undergraduate environments. The paper pays special attention to selective small liberal arts colleges, an important segment of higher education in the US, and advocates integrating instruction in research ethics wherever undergraduates are engaged in research.

Autism, the Social Thinking Curriculum, and moral courage

Michelle Garcia Winner’s Social Thinking Curriculum is widely used by schools across the USA and has garnered attention internationally. The curriculum addresses social language and behavior deficits among those on the autism spectrum. Although many embrace this curriculum without reservation, the emphasis on social conformity, including avoiding behaviors that make others uncomfortable, merits scrutiny. Individuals who have difficulty understanding social cues and conventions can derive tremendous benefit from learning to fit in, for example, or learning what is likely to make others uncomfortable and why. However, too much emphasis on pleasing others can reinforce undesirable tendencies. For example, autism is already linked to avoidant personality disorder. An emphasis on avoiding making others uncomfortable may also inhibit the development of principled ethical thinking and action. Reframing social thinking to treat it not (or not only) as an end in itself, but as a way to achieve a variety of social and personal goals would go a long way toward addressing the weaknesses of the Social Thinking Curriculum.

How Do Street-Level Research Workers Think About the Ethics of Doing Research “On the Ground” With Marginalized Target Populations?

Background: Recent research suggests that street-level research workers face ethical issues in the responsible conduct of research that are outside the scope of principal investigators’ experiences and concerns. This is particularly true of community research workers (CRWs), who come to their research work with significant connections to the community being studied. CRWs face additional or different ethical issues compared with traditional research assistants (TRAs), who perform the same kinds of research tasks with similar marginalized populations as CRWs but do not share the same close community ties with research participants. This article presents data from interviews with street-level research workers in a major U.S. metropolitan area, exploring differences and similarities in how CRWs and TRAs conceive of and talk about ethics in research. Methods: In-depth interviews were conducted with street-level research workers, both CRWs and TRAs, who worked for studies on a variety of health issues, including sexually transmitted diseases, drug use, asthma, HIV, and prenatal care, all with underserved, low-income, primarily ethnic or racial minority target populations. Results: From the 46 interviews with participants, four themes emerged from the data: Ethics requires following the protocol, ethics requires tolerating differences among people, ethics requires ensuring informed consent, and ethics requires helping or protecting participants. Discussion of tolerance was much more prominent among CRWs than among TRAs. TRAs showed greater concern about informed consent and avoiding coercion than did CRWs. Although much street-level research is done to address health disparities, the idea that ethics requires treating different groups fairly (justice) was not a prominent theme in either group. The concepts of official ethics and bureaucratic ethics are employed to contextualize front-line research workers’ understandings of ethics on the ground. Conclusion: This study found that TRAs and CRWs had some overlapping but also different ways of understanding what it means to do their research work ethically. TRAs put more emphasis on the values cited by the federal regulations and institutional review boards, such as following the protocol and obtaining proper informed consent. In contrast, CRWs emphasized tolerance and helping community members.

Achieving a Shared View of Treatment Goals

A philosophical analysis of how physician actions and treatment goals are defined and interpreted and how understanding this process can affect the success of the clinical encounter. Virtual Mentor is a monthly bioethics journal published by the American Medical Association.

Hard talk: Does autism need philosophy?:

When we think about autism as a phenomenon, and how it is perceived by autistic and neurotypical individuals as well as the society as a whole, it appears obvious that philosophical issues are in the room. In fact, the history of autism is rich in discussions and controversies on how to best understand and conceptualize autistic behaviors and experiences. Now that the voices of people on the spectrum are being expressed and heard more, a novel and more balanced picture of autism is taking form and increasingly accepted. This picture is largely influenced by notions such as neurodiversity, and stresses functional and quality of life outcomes rather than symptomatology (Bölte et al., 2018; Jonsson et al., 2017). For autistic people and their relatives, the way autism is perceived determines the stigma associated with the diagnosis. For researchers and clinicians, autism operationalization guides paradigms for studying, assessing, and intervening. Although I (S.B.) have been in the field of autism for more than 20 years now, my impression is that philosophy and philosophers have rarely been explicitly visible in autism theory, science, clinical practice, or opinion building. Therefore, I was thrilled when Kenneth A. Richman (K.A.R.), Professor of Philosophy and Health Care Ethics, approached me for a fruitful exchange of perspectives, and an introduction to the philosophy of autism. In this editorial, we share some of our discussions, characterized by a clinical autism researcher’s asking a range of naïve to challenging and provocative questions to a philosopher. We hope that this interview helps the reader of AUTISM form a better sense of the significance and scope of the philosophy of autism.

Is There a Legitimate Concept of Drug-Centered Care?

Howard Brody identifies “drug-centered care” as a contrast to “patient-centered care” and asks whether drug-centered care promotes the same outcomes that justify patient-centered care—health and dignity for patients and virtue in providers. Answering in the negative, Brody provides a sobering account of how the pharmaceutical industry molds our disease concepts and our perspectives on medications as medical tools. Brody’s new concept was set up to fail, much as if he had named it “money-centered care” or simply “bad care.” This essay asks whether there is a way to reconceptualize drug-centered care such that, even if it does not promote health, dignity, and virtue, it is at least not obviously at odds with these goals. I identify four ways to show that drug-centered care has, in limited cases, morally legitimate application. I show that whether the morally legitimate application of drug-centered care is in the service of health per se, enhancement or quality of life depends on the theoretical background adopted.