Justice and Inclusion in Research: Opportunities for Microaffections in Human Research Infrastructure

Justice and Inclusion in Research: Opportunities for Microaffections in Human Research Infrastructure

Rachel M. Magee

Information science is concerned with how people interact with and experience information. We have a vested interest in including diverse people in research to learn from their perspectives. Nondominant population increases and disparities in support and services for them make this especially important [1]. These kinds of studies are sometimes called human research or “human subjects research” [2]. It is crucial to do this research ethically and in the US ethics considerations are detailed by federal policy [3]. In this policy and the ethics reviews it requires, justice is a core concept. But justice is often evaluated with a narrow interpretation focused on benefits and harms of a study. Conceptualizations of justice change [4]. The Black Lives Matter movement [5] and information research [6, 7, 8] show discussions of justice are dynamic and happen in larger cultural contexts. For more inclusive studies, researchers should go beyond minimum mandated ethical assessments in research design. Here I share examples of ethical tensions from my work with teens. I then argue for examining research using the lens of infrastructure [9, 10] and identify opportunities to increase justice and inclusiveness in research processes, including incorporating microaffections [11].

—How can we expand microaffections in research?—

I recently connected with 54 teens in work with my colleague, Amy Leman. About 10% of these participants shared nondominant gender identities. Teens identified as polysexual gay nonbinary using he/she/they pronouns, as genderfluid (“I don’t have a gender”) as gender-queer, and nonbinary. An additional 13 participants expressed nondominant sexual identities (including queer, pansexual, bisexual, lesbian, and gay). Clearly, demographic norms are “insufficient for accounting for the complexities of…queer lives” [12, p. 1]. Typically, these complexities are not well represented ethics review forms and language. Ethics review documents often ask how many “male” and “female” participants researchers want to recruit. This may be to increase representation given long histories of gender and sex bias in medical research [13] and other fields like technology design [14].  But this norm can conflate sex and gender—female isn’t equivalent to woman [15]—and overlooks the varied identities evident in even one study. Forms and templates for ethics review prompt it, but I don’t state goal numbers of participants based on sex or gender. I use open-ended questions to ask about identities in interactions with people. For studies with larger numbers, there are excellent models for using structured questions [16, 17], relevant to many information contexts. More broadly, participants have multiple intersectional identities that deserve acknowledgement [18, 19].

To identify more of these tensions, research processes can be examined as infrastructure [9,10]. Star describes infrastructure as “by definition invisible, part of the background of other kinds of work;” it becomes more complex when examining “the situations of those who are not served by” it [9, p. 380]. Infrastructure “becomes visible upon breakdown” [9, p. 382]. Adjusting research infrastructure can improve the experiences of people in study interactions. This includes people who have completed consent processes and those considering participation. Imagine if you were in a study and your gender was not available as a response or was othered [17]. You may not want to continue. Your responses may differ from what you’d share if you felt included. If you were invited to participate in a study that detailed expected number of male and female participants in the consent discussion, but your identity was not represented, you may not participate at all. These are the kind of breakdowns that can occur in research processes.

Another example shows the importance of intentionally developing research documents and processes. Capitalizing the word white “is done by white supremacists” and doing so “risks subtly conveying legitimacy to such beliefs” [20, p. 1]. But others argue for different capitalization approaches [21, p. ix; 22]. Individuals should make thoughtful choices for themselves and their research. When identities, cultures, and languages aren’t handled carefully, people can feel invalidated, or in the language of ethics review, harmed before data is even collected. These harms may be more intense when implicit or structural biases in research interactions lead to microaggressions. Microaggressions can be intentional or unintentional, and “communicate hostile, derogatory, or negative…slights and insults toward the target person or group” [23]. To counter them, Espinal, Sutherland, and Roh advocate for information professionals using microaffections to build inclusiveness in libraries [24]. Researchers can also incorporate microaffections into study interactions. A microaffection is “a subtle but endearing or comforting comment or action directed at others that…affirms their worth and dignity, without any hint of condescension” [11]. These positive interactions can improve the experience of those interacting with researchers. They may help increase participation from people with nondominant identities and minimize potential harms of research.

How can we expand microaffections in research? Below are some ideas for creating more just and inclusive research documents and processes. These are often guided by forms and template language that can lack cultural context. Rather than engaging with template language as a default and completing only minimum requirements for ethics review, researchers can take a proactive authorship role.

Researchers can incorporate cultural competency into their language [25] and learn from those who share guidance for discussing their cultures and communities. Online examples include style guides from GLAAD [26], the National Association of Black Journalists [27], and the Radical Copyeditor’s guidance for writing about transgender people [28]. Also see manuscripts like The Elements of Indigenous Style [29].

Documentation shared with people can incorporate style and visuals that communicate welcome for those with nondominant identities. Select images relevant to the study and identities and cultures of potential participants. Free stock image resources like Nappy [30], Disabled and Here [31], and The Gender Spectrum Collection [32] can expand representation.

Documentation and interactions can acknowledge intersectional identities and highlight study goals of learning from nondominant perspectives. These descriptions don’t have to be long. Even “our research team prioritizes a welcoming and inclusive experience for all participants” can communicate inclusiveness. Online links can share more extensive research histories or inclusion statements. Researchers might consider alternatives for consent: verbal consent processes can help mitigate privacy risks or accessibility concerns.

Human research practices are worthy of examination and critique. Future work should continue to examine research documentation and ethics review practices through the lens of infrastructure [9,10]. This can help us consider and critique how justice is currently normalized in research. It will highlight where research infrastructure breaks down and where we can do more to promote justice in study procedures. Ethics review must follow legal standards and there is much to critique about research culture and organizational structures. But individual researchers have opportunities to increase justice in human research. Going beyond minimum ethics expectations with intentional study design will enable more just and inclusive research to everyone’s benefit.  

References

  1. Renert, H., Russell-Mayhew, S., & Arthur, N. (2013). Recruiting Ethnically Diverse Participants into Qualitative Health Research: Lessons Learned. Qualitative Report, 18, 23.
  2. Office for Human Research Protections (OHRP). The Belmont Report. HHS.gov. US Department of Health and Human Services, January 15, 2018. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html.
  3. Protections, Office for Human Research. “Federal Policy for the Protection of Human Subjects (‘Common Rule.” HHS.gov. US Department of Health and Human Services, March 18, 2016. https://www.hhs.gov/ohrp/regulations-and-policy/regulations/common-rule/index.html.
  4. Mastroianni, A., & Kahn, J. (2001). Swinging on the pendulum: shifting views of justice in human subjects research. Hastings Center Report, 31(3), 21-28.
  5. Black Lives Matter. (2022). Black Lives Matter. Retrieved 11/18/22 from https://blacklivesmatter.com/.
  6. Cooke, N. A. (2021). Tell Me Sweet Little Lies: Racism as a Form of Persistent Malinformation. PIL Provocation Series. Volume 1, Number 4. Project Information Literacy.
  7. Leung, & López-McKnight, J. R. (2021). Knowledge justice : disrupting library and information studies through critical race theory (Leung & J. R. López-McKnight, Eds.). The MIT Press.
  8. Mehra, B. (2021). Operationalizing theories and methods to integrate social justice in LIS scholarship. The International Journal of Information, Diversity, & Inclusion, 5(2), 1-8.
  9. Star, Susan Leigh. “The ethnography of infrastructure.” American behavioral scientist 43, no. 3 (1999): 377-391. P. 377.
  10. Star, Susan Leigh, and Karen Ruhleder. “Steps toward an ecology of infrastructure: Design and access for large information spaces.” Information systems research 7, no. 1 (1996): 111-134.
  11. Burklo, J. 2015. “Microaffection: The Antidote to Microaggression.” Huffington Post, November 24, 2015. http://www.huffingtonpost.com/jim-burklo/microaffection_b_8631396.html
  12. Ruberg, B., & Ruelos, S. (2020). Data for queer lives: How LGBTQ gender and sexuality identities challenge norms of demographics. Big Data & Society, 7(1), 2053951720933286.
  13. Kim, A. M., Tingen, C. M., & Woodruff, T. K. (2010). Sex bias in trials and treatment must end. Nature, 465(7299), 688-689.
  14. Vorvoreanu, M., Zhang, L., Huang, Y. H., Hilderbrand, C., Steine-Hanson, Z., & Burnett, M. (2019, May). From gender biases to gender-inclusive design: An empirical investigation. In Proceedings of the 2019 CHI Conference on human factors in computing systems (pp. 1-14).
  15. Council of Europe. (2022). Sex and gender. Retrieved 11/18/2022 from https://www.coe.int/en/web/gender-matters/sex-and-gender.
  16. Center for Gender and Sexual Health Equity. (2022). Gender & Sex in Methods & Measurement Toolkit. Retrieved 11/18/2022 from https://cgshe.ca/practice/research-toolkits/gender-and-sex-toolkit/tools/.
  17. Spiel, K., Haimson, O. L., & Lottridge, D. (2019). How to do better with gender on surveys: a guide for HCI researchers. Interactions, 26(4), 62-65.
  18. Gibson, A., & Bowen, K. (2019). “They don’t even see us”/” I’m afraid all the time”: Intersectional approaches to understanding disability in LIS. Sociology of information.
  19. Wilkins, A. C. (2012). Becoming Black women: Intimate stories and intersectional identities. Social Psychology Quarterly, 75(2), 173-196.
  20. The Associated Press. (July 20, 2020). Explaining AP style on Black and white. https://apnews.com/article/archive-race-and-ethnicity-9105661462.
  21. Watson, V. T. (2013). The souls of white folk: African American writers theorize whiteness. Univ. Press of Mississippi.
  22. National Association of Black Journalists. (June 2020). “NABJ Statement on Capitalizing Black and Other Racial Identifiers.” NABJ Style Guide, June 2020. https://www.nabj.org/page/styleguide.
  23. King, E. B., Dunleavy, D. G., Dunleavy, E. M., Jaffer, S., Morgan, W. B., Elder, K., & Graebner, R. (2011). Discrimination in the 21st century: Are science and the law aligned?. Psychology, Public Policy, and Law, 17(1), 54.
  24. Espinal, I., Sutherland, T., & Roh, C. (2018). A holistic approach for inclusive librarianship: decentering whiteness in our profession. Library Trends, 67(1), 147-162.
  25. Cooke, N. A., & Hill, R. F. (2017). Considering Cultural Competence: An Annotated Resource list. Knowledge Quest, 45(3), 54-61.
  26. GLAAD. (May 4, 2018). GLAAD Media Reference Guide – 10th Edition. https://www.glaad.org/reference#guide.
  27. National Association of Black Journalists. (2022). NABJ Style Guide. Retrieved 11/18/2022 from https://www.nabj.org/page/styleguide.
  28. Kapitan, Alex. “The Radical Copyeditor’s Style Guide for Writing About Transgender People.” Radical Copyeditor, January 22, 2021. https://radicalcopyeditor.com/2017/08/31/transgender-style-guide/.
  29. Younging, Gregory. “Elements of Indigenous Style.” Brush Education, February 1, 2018. https://www.brusheducation.ca/books/elements-of-indigenous-style.
  30. Nappy. (2022). Nappy: Beautiful photos of Black and Brown people, for free. https://nappy.co/.
  31. Disabled and Here. (2022). Disabled And Here Collection. https://affecttheverb.com/collection/
  32. VICE. (2022). The Gender Spectrum Collection. https://genderspectrum.vice.com/

Cite this article in APA as: Magee, R. M. (2022, December 1). Justice and inclusion in research: Opportunities for microaffections in human research infrastructure. Information Matters, Vol. 2, Issue 12. https://informationmatters.org/2022/11/justice-and-inclusion-in-research-opportunities-for-microaffections-in-human-research-infrastructure/

Author

  • Rachel M. Magee

    Rachel M. Magee is a youth advocate and assistant professor at the University of Illinois Urbana-Champaign. Her work in the School of Information Sciences is informed by her background as a librarian, and focuses on youth, the ways they interact with technology in everyday life, and resulting implications for their engagement with information. Much of this work is conducted collaboratively with teens as co-researchers. Magee has a PhD in Information Studies from Drexel University, a masters in information resources and library science from the University of Arizona, and a BS in Radio-Television-Film and a BA in English from the University of Texas at Austin.

Rachel M. Magee

Rachel M. Magee is a youth advocate and assistant professor at the University of Illinois Urbana-Champaign. Her work in the School of Information Sciences is informed by her background as a librarian, and focuses on youth, the ways they interact with technology in everyday life, and resulting implications for their engagement with information. Much of this work is conducted collaboratively with teens as co-researchers. Magee has a PhD in Information Studies from Drexel University, a masters in information resources and library science from the University of Arizona, and a BS in Radio-Television-Film and a BA in English from the University of Texas at Austin.