“Caught Between the Suffering and the Good”

A focus on social accountability and responsibility in public and private sectors raises questions about if and how social scientists should act upon the concerns of those with whom they conduct research. Leonardo Campoy argues that anthropologists should be empowered to intervene in the clinical situations they study rather than being limited to actions associated with participant observation. Although his reflections raise issues pertinent to the ethical practices of many researchers, we situate our response in conversation with the historical shifts in ethnographic interest that, most recently, has moved from the suffering subject towards an anthropology of the good. Grounding our reflections in medical anthropology, we discuss the challenge of appropriating positivist–scientific terms to propose the utility of research and, more specifically, of how research results could be used to think through and, thus, guide how researchers respond to—enact and embody—the care required in the ethical conduct of research.

Drawing Distinctions Among Different Types of Research on Persons with Autism

This commentary engages two aspects of Kenneth A. Richman’s chapter “Autism, Autonomy, and Research” (Chapter 5). First, several excellent points made in the chapter are discussed. Second, a distinction is introduced among types of research on persons with autism, a distinction that would strengthen his discussion. Drawing distinctions among the ways in which informed consent is confounded by symptoms of autism, as well as among types of research on autism, would further strengthen an already compelling chapter.

Differing Understandings of Informed Consent

As research and exploration in the area of intellectual and profound disabilities expands, the need for a more nuanced definition of consent is becoming increasingly apparent. Although it is a reasonable assumption that people with disabilities are deserving of the same rights and protections that have been more readily afforded to others, the reality has been quite the opposite. Changing the paradigm requires challenging ethical and methodological assumptions.

Autism, Autonomy, and Research

This chapter addresses ethical issues for informed consent when recruiting autistic participants for research. The process of informed consent for participation in research involves some abilities, such as dialogue and understanding the intentions of the researchers, that can be especially challenging when autistic individuals are being asked to participate. This chapter reviews these abilities, and suggests ways to provide meaningful support to promote autonomy and help researchers meet their responsibilities. Beyond these more general challenges, it explores Hans Jonas’s suggestion that true informed consent for research requires that participants identify with the goals of the researchers. Given the plurality of perspectives on how to respond to autism, Jonas’s ideas point to additional ethical concerns that can arise when autistic people are recruited for research on autism.

Research Cohorts

Some people with cognitive disabilities are perceived to have compromised autonomy and thus unable to consent to research participation. Individuals without cognitive disabilities are assumed to have the capacity to consent, despite falling prey to errors such as the therapeutic misconception, unrealistic optimism, or a lack of appreciation. The distinction between conceptual errors made by presumably “typical” individuals and those made by individuals with cognitive impairments may not be so different, and differences that do exist not so profound. Best practices call for a “meeting in the middle”—a recognition that “typical” individuals are not nearly as autonomous as we first think, and that the autonomy of “atypical” individuals is not as compromised as first appears. Two objections to this conclusion are addressed: exploitation, and a history of research abuses. Respecting persons with cognitive impairments means recognizing that their imperfect autonomy is not dissimilar from the imperfect autonomy of others.

Toward a Research Ethics Culture of Inclusion and Participation

In many ways, the contributions in this book illustrate how the culture of research and research ethics presents challenges to the inclusion and participation of people with cognitive impairments as genuine agents. A culture of regulatory research ethics has institutionalized ethics as soft law with bureaucratic and administrative overtones. This development is problematic because of the need for more flexible and personalized approaches to foster the agency of research participants with cognitive impairments and differences. In my eyes, many chapters of this book are consistent with the development of deeper and richer forms of research ethics. They interrogate our established norms and standards on how to deal with research ethics issues given the differences encountered in the people with whom the research is done with the ultimate goal of fostering a profound and open-ended view of ethics in research.

Making Research More Ethical for Adults with Fetal Alcohol Spectrum Disorder

In this chapter, the author reflects on challenges associated with conducting focus group interviews with adults with fetal alcohol spectrum disorder (FASD)—a complex neurodevelopmental disability caused by alcohol exposure in utero. Given the heterogeneity of this diagnosis, people with FASD have different strengths and weaknesses. Therefore, for effective and ethical research inclusion, each person with FASD may need unique accommodations, which can help to both minimize concerns about unjust research exclusion and mitigate sources of vulnerability. To explore these issues, the author describes the focus group study, presents anticipated risks and challenges, explores critical stakeholder feedback, and addresses ethical tensions arising from the resulting protocol adjustments. This chapter demonstrates the importance of researchers remaining open to criticism and being willing to work through their moral discomfort.

Challenges of Participating in Research About Living with Mild Cognitive Impairment Among Disabled Veterans

This chapter provides insights from an ongoing study of elderly veterans’ experiences of living with newly diagnosed mild cognitive impairment (MCI). Recruitment for this qualitative study was difficult. There were multiple reasons for low participation rates. Caregivers discouraged participation. Physicians often did not inform patients of the research opportunity. Patients at Veterans Affairs Medical Center hospitals often have appointment fatigue, being scheduled for numerous clinics in one afternoon. And, owing to concerns about protecting a vulnerable group, the institutional review board protections for recruitment are very limiting. It is imperative to find a way to increase recruitment for this doubly vulnerable population. Providing opportunities for reflection, self-disclosure, and validation to those at early stages of MCI through research participation can serve therapeutic functions in their journey of living with forgetting. Learning from individuals with recent onset of MCI provides a unique window into the lived experience of MCI.

Vulnerability, Empowerment, and Dissent

This is a commentary on Chapters 1–17. It focuses on the vulnerability of potential research participants to undue influence or coercion, empowerment to make decisions about taking part in research, and the importance of creating a space for potential participants to say no.

Joining Voices

In this chapter anthropologist Anne Kohler and research assistant Benjamin Majewski discuss the process for and stakes of including researchers with intellectual disabilities in social science research. For Benjamin, who has Down syndrome, the opportunity to learn about and participate in ethnographic research as a stakeholder rather than simply a participant helped him to understand that “research is everywhere.” He advocates for social scientists to hire more people with cognitive differences as research partners.