Chapter 7 External Activities

Outside of the activities within the department we describe elsewhere, we have participated in and led activities outside the department. Some of them are listed here.

7.1 AMIA 2024 Podium Talk

Adrienne Pichon and Chris Allsman gave a talk at AMIA 2024 titled “A Broad Perspective on Justice-Oriented Research in Biomedical Informatics”. This page reiterates some main points and provides links to references and further reading.

7.1.1 Overview and Activities of the Justice Informatics Collaborative

See other pages on this website for a history of our group and a list of books we have read as part of our efforts. We also highlighted some activities not yet described on this site, including our role as reviewers for the AMIA Inclusive Language and Context Style Guidelines, a workshop we held at AMIA 2022, and subsequent work (in review) synthesizing principles for pursuing justice-oriented research.

We additionally summarized the core values of our group as “humility + bravery + community”.

7.1.2 Significance of Trainee-led, Bottom-Up Work

We suggested that the model demonstrated by our group has unique strengths in promoting justice within biomedical informatics. In particular, it supports: 1) foregrounding trainee expertise and autonomy, 2) working across disciplines and institutions, and 3) aligning academic work with trainee goals and values.

The final point was described in the context of the theory of goal congruity. (Amanda B. Diekman, Joshi, and Benson-Greenwald 2020; Amanda B. Diekman et al. 2010) give an overview of goal congruity, and (Gautam et al. 2024; Lewis et al. 2019; Griffin 2020) discuss how a lack of congruity harms diversity and retention. Similarly, (Clegg 2024) discusses the role of community and (A. N. Washington 2020) discusses the need for cultural competency.

7.1.3 Fostering an Environment for Justice-Oriented Work

For institutions: See (Marrero et al. 2013; Baker 2015) for a discussion of equitable practices for awarding tenure or allocating institutional resources. (McFarling 2021; Ezell 2024; Calvin A. Liang, Munson, and Kientz 2021a) describes how health equity research may be co-opted to further institutional or researcher goals without materially supporting the needs of individuals and communities under study.

For educators and mentors: (Chávez 2012) describes the concept of cultural humility and (Murray, Hinton, and Spencer 2022) discusses how to apply it in academic mentoring. There is a large body of literature on developing culturally responsive, justice-oriented curricula in biomedical and computing disciplines, including (Yadav, Heath, and Hu 2022; Vakil 2018; Ambrose et al. 2014; Lin 2022).

For researchers and trainees: See here for a long list of resources. A few other articles that point to frameworks to incorporate in your research or gaps in how researchers often conceptualize justice in biomedical informatics:

Indigenous Health Equity (Echo-Hawk 2019)

Considering “Respect for Sovereignty” Beyond the Belmont Report and the Common Rule: Ethical and Legal Implications for American Indian and Alaska Native Peoples (Krystal S. Tsosie and Garrison 2021)

Unintended by design: On the political uses of ‘unintended consequences’ (Parvin and Pollock 2020)

Residents for Respectful Research (R3) (“PHAR CVille Residents for Respectful Research”)

A contextual integrity approach to genomic information: what bioethics can learn from big data ethics (Groot 2024)

Opportunities for incorporating intersectionality into biomedical informatics (Bear Don’t Walk et al. 2024)

References

Ambrose, Adrian Jacques H, January M Andaya, Seiji Yamada, and Gregory G Maskarinec. 2014. “Social Justice in Medical Education: Strengths and Challenges of a Student-Driven Social Justice Curriculum.” Hawaii J. Med. Public Health 73 (8): 244–50.

Baker, Kelly J. 2015. “‘It’s Gonna Be Forever or It’s Gonna Go down in Flames’: Tenure and (In)justice – By Kelly J. Baker | The Marginalia Review of Books — Themarginaliareview.com.” Margainalia.

Bear Don’t Walk, Oliver J., Amandalynne Paullada, Avery Everhart, Reggie Casanova-Perez, Trevor Cohen, and Tiffany Veinot. 2024. “Opportunities for Incorporating Intersectionality into Biomedical Informatics.” Journal of Biomedical Informatics 154: 104653. https://doi.org/https://doi.org/10.1016/j.jbi.2024.104653.

Chávez, Vivian. 2012. “Cultural Humility.” Youtube. 2012. https://www.youtube.com/watch?v=SaSHLbS1V4w.

Clegg, Tamara L. 2024. “Community Is Critical Too.” Commun. ACM 67 (5): 40–42.

Diekman, Amanda B, Elizabeth R Brown, Amanda M Johnston, and Emily K Clark. 2010. “Seeking Congruity Between Goals and Roles: A New Look at Why Women Opt Out of Science, Technology, Engineering, and Mathematics Careers.” Psychol. Sci. 21 (8): 1051–57.

Diekman, Amanda B., Mansi P. Joshi, and Tessa M. Benson-Greenwald. 2020. “Chapter Four - Goal Congruity Theory: Navigating the Social Structure to Fulfill Goals.” In, edited by Bertram Gawronski, 62:189–244. Advances in Experimental Social Psychology. Academic Press. https://doi.org/https://doi.org/10.1016/bs.aesp.2020.04.003.

Echo-Hawk, Abigail. 2019. “Indigenous Health Equity.” Indigenous Health Equity.

Ezell, Jerel M. 2024. “The Health Disparities Research Industrial Complex.” Social Science & Medicine 351: 116251. https://doi.org/https://doi.org/10.1016/j.socscimed.2023.116251.

Gautam, Aakash, Anagha Kulkarni, Sarah Hug, Jane Lehr, and Ilmi Yoon. 2024. “Socially Responsible Computing in an Introductory Course.” In Proceedings of the 55th ACM Technical Symposium on Computer Science Education v. 1. New York, NY, USA: ACM.

Griffin, Kimberly A. 2020. “Institutional Barriers, Strategies, and Benefits to Increasing the Representation of Women and Men of Color in the Professoriate.” In Higher Education: Handbook of Theory and Research, 1–73. Cham: Springer International Publishing.

Groot, Nina F de. 2024. “A Contextual Integrity Approach to Genomic Information: What Bioethics Can Learn from Big Data Ethics.” Med. Health Care Philos. 27 (3): 367–79.

Krystal S. Tsosie, Katrina G. Claw, and Nanibaa’ A. Garrison. 2021. “Considering ‘Respect for Sovereignty’ Beyond the Belmont Report and the Common Rule: Ethical and Legal Implications for American Indian and Alaska Native Peoples.” The American Journal of Bioethics 21 (10): 27–30. https://doi.org/10.1080/15265161.2021.1968068.

Lewis, Colleen, Paul Bruno, Jonathan Raygoza, and Julia Wang. 2019. “Alignment of Goals and Perceptions of Computing Predicts Students’ Sense of Belonging in Computing.” In Proceedings of the 2019 ACM Conference on International Computing Education Research. New York, NY, USA: ACM.

Liang, Calvin A., Sean A. Munson, and Julie A. Kientz. 2021a. “Embracing Four Tensions in Human-Computer Interaction Research with Marginalized People.” ACM Trans. Comput.-Hum. Interact. 28 (2). https://doi.org/10.1145/3443686.

Lin, Kevin. 2022. “CS Education for the Socially-Just Worlds We Need: The Case for Justice-Centered Approaches to CS in Higher Education.” In Proceedings of the 53rd ACM Technical Symposium on Computer Science Education - Volume 1, 265–71. SIGCSE 2022. New York, NY, USA: Association for Computing Machinery. https://doi.org/10.1145/3478431.3499291.

Marrero, David G, Emily J Hardwick, Lisa K Staten, Dennis A Savaiano, Jere D Odell, Karen Frederickson Comer, and Chandan Saha. 2013. “Promotion and Tenure for Community-Engaged Research: An Examination of Promotion and Tenure Support for Community-Engaged Research at Three Universities Collaborating Through a Clinical and Translational Science Award.” Clin. Transl. Sci. 6 (3): 204–8.

McFarling, Usha Lee. 2021. “‘Health Equity Tourists’: How White Scholars Are Colonizing Research on Health Disparities — Statnews.com.” Stat.

Murray, Sandra A, Antentor Hinton Jr, and Elsie C Spencer. 2022. “Developing Cultural Humility in Immunology and STEMM Mentoring.” Trends Immunol. 43 (4): 259–61.

Parvin, Nassim, and Anne Pollock. 2020. “Unintended by Design: On the Political Uses of ‘Unintended Consequences’.” Engag. Sci. Technol. Soc. 6 (August): 320–27.

“PHAR CVille Residents for Respectful Research.” https://www.pharcville.org/phars-focus/residents-for-respectful-research/.

Vakil, Sepehr. 2018. “Ethics, Identity, and Political Vision: Toward a Justice-Centered Approach to Equity in Computer Science Education.” Harv. Educ. Rev. 88 (1): 26–52.

Washington, Alicia Nicki. 2020. “When Twice as Good Isn’t Enough: The Case for Cultural Competence in Computing.” In Proceedings of the 51st ACM Technical Symposium on Computer Science Education, 213–19. SIGCSE ’20. New York, NY, USA: Association for Computing Machinery. https://doi.org/10.1145/3328778.3366792.

Yadav, Aman, Marie Heath, and Anne Drew Hu. 2022. “Toward Justice in Computer Science Through Community, Criticality, and Citizenship.” Commun. ACM 65 (5): 42–44.