RHM (3.4) and a Section on Ethics

by: Michelle Sonnenberg

As you plan your courses, keep the new issue of Rhetoric of Health and Medicine 3(4) in mind. This issue has a special section on ethics. The essays from this special section continue RHM’s commitment to an ongoing examination of ethics which is vital to research methods and methodologies. Each piece on its own offers perspectives on how to practice and grow methodological approaches that hold ethics at their core. They also work together in distinct ways by balancing, expanding on, validating, and/or questioning the methodological approaches to research involved in collecting qualitative data from participants.  These explorations into ethical positionality and beyond are essential as RHM continues to grow. These works offer ethical approaches that could be useful in a wide variety of undergraduate and graduate courses focused on the rhetoric of health and medicine or on rhetoric and methodologies more broadly. Situating and framing the special section is an introduction in which the editors ask readers to consider a kairos-driven approach to ethics in research—one that emerges “situationally” as it is often “in the moment that a problem presents itself that exigent ethical moves often become apparent” (p. 430).

 

Topics that emerge in the special section include:

• Entangled ethical questions that shape our research approaches
• Complex positionalities for RHM researchers
• Considerations for ethically adapting social sciences methods and methodologies
• Inquiries into bias when facing how researcher identities manifest in and through research
• Power dynamics and trust in qualitative research
• Ethical approaches to sharing data

 

Here is a more robust preview of each piece:

Melissa Carrion’s “Ethics of recruitment,” discusses her experiences interacting with research participants in an online discussion board of anti-vaxx moms. She explores how these interactions challenged her to consider both her positionality and ethical approaches to generating trust within an oppositional community (see Sterud). As a new mom, Carrion personally considered the risk surrounding vaccination, and her reflections on her personal struggle (itself resulting in the decision to vaccinate) helped her navigate her positionality in unforeseen communication snags as she won the trust, and therefore entry into, her research participants’ community. Further, her disclosure of this fact in her writing helps to eliminate perceived researcher bias by the reader.

Carrion constructed a feminist ethical framework as a methodology (Harding; Hesse-Biber & Yaiser; Kirsch)—one meant to establish and maintain transparency with research participants’ communities. She accomplished this by scrutinizing her rhetorical voice when communicating with participants and her interpretation of participants’ comments, working to maintain a balance of power between participant and researcher by considering their insights as situated knowledge, and giving her personal views only when a participant directly asked them.

 

In “An Ethics-of-Care Paradigm in Opposition Research: The Tensions of Studying a Pro-Life Organization” Sommer Marie Sterud applies a care-based ethics approach to researching a pro-abortion lobbying group—an oppositional community (Nelson, Dulio, & Medvic). This mirrors Carrion’s inquiry into how to ethically interact with an oppositional group as research participants. Sterud defines care-based ethics as a multifaceted “species activity” (Tronto) that takes into account attentiveness, responsibility, competency, and responsiveness as elements of care (Tronto), and she furthers this with a conception of care as a cluster of practices and values. Sterud points out that care ethics attunes to a complicated overlapping set of contexts, much resembling a network, and that listening as an act of reciprocity can grant researchers entry into participant groups they ideologically oppose. As a practice in research, her use of care-based ethics, rhetorical listening (Ratcliffe), and generosity (Cintron) drove her work within the pro-life lobbying group and led to an expansion of her ability to “stand under” the perspectives and choices of said oppositional group. As a result, her concepts of reciprocity, and by extension, ethical choices in her research were expanded. Her methodological moves demonstrate a way to build bridges across ideological divides, not by erasing difference, but by acknowledging researcher positionality and working to balance power dynamics between researcher and participants (see Reed).

Like Carrion, Sterud gave thought to how expressing her personal views with participants would affect how they interacted with her. What might they hide? How might they alter their own rhetorical positionality? She decided that sharing her views with this community would work against her research.

 

Amy Reed’s “Not iConflicting obligations: Considering the downstream effects of human subjects research protections” also examines how to best work with and within an oppositional group—genetic counselors who advise prospective parents on whether or not to continue a pregnancy when carrying a child with Down syndrome. Reed sought to explore how the “clinical communication practices of physicians and genetic counselors “may or may not be shaped by advocate bias. Reed views her research through a critical lens, noting how as researchers we are accountable to groups in positions of power and have an obligation to work to protect vulnerable populations.  The same stands for oppositional groups. Specifically, she determines that advocates do not deserve the same consideration as prospective parents due to their established authority. Further, she recognizes issues like power dynamics (she experienced being treated like a student by advocates who brought her in a clinical setting to observe advising sessions) between doctors and advocates can reenforce status quo decisions that work against helping develop parental autonomy in decision-making. The downstream effects of powerful groups on vulnerable groups demands researchers question the ways in which their participation in research shapes their ethical obligations.

 

Kristen Marie Bivens and Candice A. Welhausen’s “Pivoting toward rhetorical ethics by sharing and using existing data and creating an RHM databank: An ethical research practice for the rhetoric of health and medicine,” calls for scholars of RHM to “embrace analyzing existing data, while also considering the implicit and potential ethical implications of doing so.”  Their piece pulls from their previous research with PulsePoint Respond, an app that connects people experiencing sudden cardiac arrest (SCA) with off duty first responders. They discuss ethical questions that arise from using derived data and how datasets can be ethically recycled and reinvented for research purposes. They stress that this work is expansive because it both saves time and shares knowledge. Being aware of ethical entanglements that arise from data sharing, they advocate for a “distinctively ethical” (Baldwinson) frame for sharing and storing RHM data that is rooted in human rights. This can involve developing ethical disclosure statements that explicate to participants how gathered data might be used in future research projects (i.e., who will have access to the data, for how long, and if participant anonymity is fully feasible in light of undetermined research questions and interpretations of data) and coordinating IRB certification across institutions to facilitate ethical data sharing. A human rights lens for ethical data sharing lends to the consideration of “participant privacy and confidentiality, removal and disconnection of identifiers from the expected context, and informed consent.”

 

After having students read the special section on ethics, here are some questions that might be useful for discussion or for written reflections:

• How do you see the introduction to the ethics special section working with your own views of ethics?
• How do virtue ethics differ from ethics that emerge “instant by instant”?
• What value can you see in situational ethics as defined in the section, and how do the pieces realize it or not?
• How do we position and reposition ourselves in response to situational exigencies that arise in research that involves data collection in a way that maintains our credibility with a given community?
• How do we account for withholding personal beliefs from our research participants in our publications? Is withholding or disclosure necessary to establish trust?
• How might we practice navigating rhetorical voice in the classroom as preparation for research and workplace situations?
• What ethical considerations come into play when working with marginalized, stigmatized, and outlier communities?
• How do the participants we enroll adapt and use their experiences with us in their own communities? Why might this put us, as researchers, at risk?
• How do we enroll participants and develop relationships based on reciprocity?
• What is the tension between “participant” and “subject” as identifying terms when establishing relationships based on a feminist ethical framework (Carrion) or care-based ethics (Sterud)?
• What terminology is best: research subjects or research participants?
• How do we navigate messy research issues like participants maintaining barriers that have negative downstream effects on vulnerable groups?
• How do we navigate being stuck in the middle of power dynamics?
• How is informed consent related to establishing reciprocity between researcher and participant?
• In what ways might informed consent establish researcher credibility in the field?
• How might a verbal conversation with research participants accompanying written disclosure materials foster a balance of power?
• How do these essays complement or address the issues raised in the journal previously by Baldwinson and Lynch? Do you see these essays as fulfilling or challenging the calls put forth by them?

 

Thanks for reading! If you use this ethics special section in your classes, we’d love to hear how it goes! You can reach the RHM editors at: rhm.journal.editors@gmail.com