Relationships and Rules in the Practice of Public Health Research

Relationships and Rulesin the Practice ofPublic Health Research Kenneth A. Richman MCPHS Leslie B. Alexander Bryn Mawr College

Presenting findings fromResearch Extenders & Research Integrity: A New Frontier Leslie B. Alexander, PI1RO1NR009879-01

Study Overview: Aim To examine how street-level workers doing community-based research understand and approach the responsible conduct of research and research integrity

Study Overview: Participants Research Extenders (REs) Hired due to familiarity with and access to the research population May live in the same community where the study takes place May share life experiences with the research participants May have received services from the agency conducting the study Communicate in participants’ language - “talk their talk”

Study Overview: Participants Research Extenders (REs) may be: Single-Role (RE-S, perform research duties only) or Dual-Role (RE-D, service and research roles)

Study Overview: Participants Traditional Research Assistants (TRAs) Do not have special familiarity with or access to the research populations Do not live in same community as the research population Do not share life experiences with the research population Often considering a career in research

Study Overview: Participants Participants’ research topics: community health initiatives, drug and alcohol use, school services, homelessness, parenting, violence, HIV/AIDS Participants’ work locations: private homes, on the street, office sites, schools, health clinics, prisons, service agencies

Study Overview: Participants Participants’ research duties: recruit, screen, interview/survey, schedule and follow-up Participants’ other duties (RE-Ds): behavioral health interventions, health screenings and treatments, education and referrals

Study Overview: Participants N=46 16 Single Role Research Extenders 15 Dual Role Research Extenders 15 Traditional Research Assistants Sex: 41 female, 5 male Age: 39 years (SD:13) Years on job: 3.8 (SD: 3.9)

Study Overview: Participants RACE [needs correction] 25 African American 12 White 6 Hispanic 2 Asian 1 Native American EDUCATION 4 high school diploma/GED 16 some college 22 college degree 4 advanced degree

StudyOverview: Methods In-depth, semi-structured interviews Open ended questions & scenarios presenting ethical dilemmas Short demographic survey Conducted in private homes, neutral sites, workplaces after hours Most lasted approximately 1.5 hours

Data Several of our participants shared stories of ethically questionable behavior that was difficult to fit into expected categories. Some of these stories were obviously violations of professional standards, but seemed to come from good intentions.

Data: “Going Beyond” Stories “I’ve actually walked into a mom being abused and she ran out with me… Like a decoy, I guess. It was like, oops, I forgot something in the car. Do you mind, I’m so tired; could you walk me to the car so I can get this and I can give it to you… and that kind of thing, and then she jumped in my car. … And at that point, because we’re really not responsible… that’s a different area, that’s not what we’re there for and we’re really not allowed to have anybody in our vehicles, but I wasn’t gonna leave here there…” (African American Female RE-D)

Data: “Going Beyond” Stories “See, that’s the one thing with heroin, your body craves it. Yeah, we could’ve let him stay sick, that was an option, but we chose not to take that option, we chose to go get him a bag of heroin. Well, really we got him more than a bag. We got him enough to last him for the weekend so that he would be able to come to treatment, come Monday morning we could get him in detox.” (African American male, RE-S)

Data: “Going Beyond” Stories “…I had an opportunity to take home some kids during Christmas… I did have to check to make sure it wasn’t out of my job description and it wasn’t. They were like, yeah, do that, so it was kind of like okay.” (African American female RE-S)

These choices clearly deviate from the standards and expectations of researchers and research administrators. How do front-line research workers justify these behaviors? What concepts or values are relevant to these choices?

Finding The data suggest that participants recognized a category of relationship-based duties. These perceived duties often conflicted with protocols and with accepted professional/ personal boundaries.

Interpretive Schema The Ethics of Care (Relational Ethics)

Ethics of Care: Theory "An ethic of justice focuses on questions of fairness, equality, individual rights, abstract principles, and the consistent application of them. An ethic of care focuses on attentiveness, trust, responsiveness to need, narrative nuance, and cultivating caring relations.“ Held, Virginia (2006), p. 15.

Ethics of Care in theResearch Ethics Literature “‘He is now like a brother, I can even give him some blood’ – Relational ethics and material exchanges in a malaria vaccine ‘trial community’ in The Gambia.” (Geissler, et al. 2008 in Soc Sci &Med)

Ethics of Care in theResearch Ethics Literature “These transactions are guided by a concrete and relational form of ethics, which contrasts with the abstract and vertical formal ethical principles underwriting the scientific study protocol.” (Geissler, et al. 2008)

Ethics of Care in theResearch Ethics Literature “…different ethical frameworks—a principles-based ethics of rights and a context-based ethic of care—license different kinds of interaction and rhetorical persuasion.” (Barton 2008, in College Composition & Communication)

Ethics of Care in theResearch Ethics Literature “No longer is it sufficient to talk only about the conflicting goals of clinical care and clinical research. We need to delve more deeply into how human subjects studies are performed and examine the feminist ethics issues of power differentials, context, relationships, and emotions.” (DeRenzo 1998, in J. of Women’s Health)

Ethics of Care in theResearch Ethics Literature Celia B. Fisher (1997) has cited a “justice-care perspective” to support including participant perspectives in setting ethical standards for research.

Data: Relationship-Based Duties “I’m not obligated to you after I get off of work. And, no, I know I’m not obligated to them… But if something had happened to her, I knew I left her on that street and if something happened to her, then what? …See, no matter what you say to me, that’s something I have to live with… you can’t lay down on my pillow for me… and, you know, not that I would ever wanna lose my job but I definitely have to do what I think is right by another human being and I can’t let anybody dictate.” (African American Female RE-S)

Data: Relationship-Based Duties “Or if a client asks a specific question, you know, why can’t I answer it? But in the rules, if I’m doing something by the book, I’m not supposed to. But then that then kind of breaks some kind of relationship that I have with whoever I’m asking because if they ask me a question and I can’t answer it, what makes me thinks I can ask them another question and they’re gonna feel free to answer it?” (Latina RE-D)

Data: Relationship-Based Duties “It’s like once you invited someone into your study or to share their experiences I think you owe at least in part some type of response to them for the things that they shared.” (African American female TRA)

Data: Relationship-Based Duties “I just feel really bad for her. It’s like we’ve developed this relationship and it’s… it’s like she depends on me, not just me but other, other people, too. […] to just talk things through and to sort of, to sort of give her some insight into her problems and to help her relieve some stress […] I guess the problem is is that, even though in the beginning when they consent, I’m sure they’re told… I haven’t actually ever consented anyone but I’m sure it’s in there… you know, after twenty weeks you will end. No one remembers that, you know, six months later.” (Caucasian Female TRA)

Data: Relationship-Based Duties “…there was another girl who got pregnant and I was seeing her and she was extremely underweight […] but I hadn’t really developed like a good, a really good relationship with her. I mean it wasn’t bad but it was just sort of neutral. Like I went to her house, we talked about not really much of anything important, and I gave here these supplements that she really liked, but it was just sort of a… it wasn’t much of an in-depth relationship. So when she got pregnant I didn’t really have any problem saying, okay, you know, good luck with your pregnancy, and if you need anything from… okay… good-bye.” (Same Causcasian Female TRA)

Data: Relationship-Based Duties An asymmetry: 40% of our respondents spoke about relationship-based duties, distributed roughly equally among RE-S, RE-D and TRA 9 out of 31 REs told “going beyond” stories, but only 1 out of 15 TRAs told of actually “going beyond” (acting on a relationship-based duty)

Conclusions/Recommendations Front-line research staff working with human subjects face ethical challenges different from those that can be described by the principle-based approach of the Belmont Report and other guidance documents.

Conclusions/Recommendations Some of the choices these staff make can be unanticipated and misunderstood by investigators and IRBs.

Conclusions/Recommendations An alternative theoretical tool, the ethics of care, does a better job of capturing the lived experience of our respondents.

Conclusions/Recommendations Recognizing this can help investigators address relevant challenges to research integrity in training and debriefing meetings, and design protocols that anticipate and avoid these challenges.

Conclusions/Recommendations Taking the perspectives of front-line research staff seriously can mean questioning the received wisdom about our responsibilities in research with human subjects.

Relationships and Rules in the Practice of Public Health Research