Session 5 - Share and Disseminate

Too often in science, we put the onus for ethical behavior on individuals, but an individual cannot ultimately behave ethically within an unethical framework - Stephanie Russo Carroll (Dene/Ahtna)

Description

Once research is completed, many researchers look to share out their findings – many funding agencies and journals require it – and have to determine how much access to allow to others, certain agreements that satisfy institutional/organizational requirements, as well as proper stewardship of the research data. With the prevalence of AI and data concerning vulnerable populations, CARE and community-driven oversight of data helps narrow the “moral distance” that occurs when data is shared. While there are many benefits to data being Accessible, oceanographer and Native Hawaiian Rosie Alegado remarks, “‘Accessible’ means somebody can access it but you are still allowed to regulate it” (cited in Ravindran, 2024).

Questions

• How can a participant(s) and their data be protected from ways of sharing/reuse that are new or may not exist at the time of giving consent?
• Is it possible to reduce harm for individuals/communities while contributing to the greater benefit that may result from the research data?
• What does “openness” and “transparency” mean to you when considering sharing research data? Would the definitions change as the context of the research and the data changes?

Resources

• Evans, E.A., Delorme, E., Cyr, K. et al., A qualitative study of big data and the opioid epidemic: recommendations for data governance in BMC Med Ethics 21, 101 (October 2020)
• Suchikova, Y., Nazarovets, S., Extending the CARE Principles: managing data for vulnerable communities in wartime and humanitarian crises in Sci Data 12, 420 (March 2025)
• Abebe, R., Aruleba, K., Birhane, A., Kingsley, S. et al., Narratives and Counternarratives on Data Sharing in Africa in Conference on Fairness, Accountability, and Transparency (FAccT ’21) (March 2021)
• Ravindran, S., Open with Care in Science (October 2024)
• Mitra, A., Open with care: transparency and data sharing in civically engaged research in Politics, Groups, and Identities, 1–26 (December 2023)
• Huvila, I., & Sinnamon, L. S., When data sharing is an answer and when (often) it is not: Acknowledging data-driven, non-data, and data-decentered cultures in Journal of the Association for Information Science and Technology, 75(13), 1515–1530 (October 2024)
• Exploring the Ethical Imperative for Data Sharing (September 2015)
• Villegas-Galaviz, C., Martin, K., Moral distance, AI, and the ethics of care (March 2023)