Skip to main content

Protection of research participants' rights in open science

Learning Objectives

  • Identify potential risks to human research participants within the context of open science in social sciences.
  • Understand strategies to minimize risks to research participants while practicing open science in social sciences.

Introduction

The rights and interests of research participants are at the heart of research ethics. A key ethical challenge in the implementation of open science in social sciences is achieving the goals of openness and data sharing without compromising the rights, dignity, and welfare of research participants. Although the privacy of participants can be fully protected in some open science datasets through complete anonymization, this level of privacy protection is often difficult, if not impossible, to achieve for various types of data (e.g. narratives, interviews), potentially impacting their utility for research. Qualitative data, often impossible to anonymize completely, cannot be shared as easily without identifying research participants, thus potentially raising concerns on privacy, stigmatisation, discrimination etc.. Nonetheless, even when total anonymization is not feasible, it remains crucial to allow access to unique datasets, such as oral histories of participants of significant historical events or movements, for other researchers.

In the context of open science, which emphasizes transparency, collaboration, and data sharing, there are significant risks to human research participants, particularly concerning privacy Open social science may involve sharing detailed quantitative and qualitative datasets, including personal information, narratives, images, audio recordings etc. Inadequate anonymization can compromise participant privacy. Moreover, even with anonymization, the risk of re-identification sometimes persists, especially when integrating datasets or employing advanced analytics, potentially revealing identities unintentionally.  Researchers also have to evaluate whether data may contain sensitive information that, if openly shared, could lead to stigmatization or discrimination against participants, particularly in small or close-knit communities. 

Ensuring respect for autonomy and privacy in open science may necessitate novel approaches to participant engagement and consent. For example, informed consent should include information about sharing data in open access and acknowledge the limitations around withdrawing data once shared or controlling its subsequent use, which might be unforeseeable at the time of data collection. Researchers must recognise the complexities of obtaining informed consent in open science, as participants often maintain ongoing interests in how their data is used, including concerns over potential misuse. Participants may not fully grasp the extent of data sharing, and this may lead to a decrease in trust. They might also be unaware of potential secondary uses of their data, raising issues about misuse and loss of control. Concerns might also arise over the direct benefits of data sharing, especially if they perceive the advantages as skewed towards researchers or institutions rather than the broader community or themselves.

ROSiE General Guidelines on Responsible Open Science point to the responsibilities of different stakeholders to ensure research participants' rights:

3.1. Research participants' autonomy, dignity, and other rights should always be respected. In an open science environment, alternative modes of engagement and consent might have to be considered and ethically reflected on by researchers and research ethics committees.
3.2. Informed consent forms and procedures should include at a minimum, information on open science practices, privacy protection, limitations, and risks of reidentification. Researchers should ensure that informed consent processes ensure understanding among the research participants.
3.3. Protecting the privacy and control interests of research participants and their communities is essential in an open data environment. Researchers, research ethics committees, Research Performing Organisations, and policymakers should analyse the risks of reidentification and dual use in different fields and develop governance mechanisms and technical solutions to address these risks. Exploring other approaches to protect privacy, other than anonymization, is increasingly becoming important and is thus recommended.

To mitigate these risks, humanities scholars must prioritize ethical considerations, provide clear and transparent participant information, employ stringent anonymization methods, and comply with data protection and privacy standards. For example, Tamminen et al. suggest guidance for decision-making regarding responsible storing and sharing of qualitative data:

Considerations regarding the storage and sharing of qualitative project materials and data

Considerations regarding the storage and sharing of qualitative project materials and data. Source: Tamminen K. et al. https://doi.org/10.1080/2159676X.2021.1901138, CC BY 4.0

References

  1. Tamminen, K. A., Bundon, A., Smith, B., McDonough, M. H., Poucher, Z. A., & Atkinson, M. (2021). Considerations for making informed choices about engaging in open qualitative research. Qualitative Research in Sport, Exercise and Health, 13(5), 864-886. https://doi.org/10.1080/2159676X.2021.1901138
  1. Campbell, R., Goodman-Williams, R., & Javorka, M. (2019). A trauma-informed approach to sexual violence research ethics and open science. Journal of interpersonal violence, 34(23-24), 4765-4793. https://doi.org/10.1177/0886260519871530
  2. DuBois, J. M., Strait, M., & Walsh, H. (2018). Is it time to share qualitative research data? Qualitative Psychology, 5(3), 380–393. https://doi.org/10.1037/qup0000076
  3. Fox, J., Pearce, K. E., Massanari, A. L., Riles, J. M., Szulc, Ł., Ranjit, Y. S., ... & L. Gonzales, A. (2021). Open science, closed doors? Countering marginalization through an agenda for ethical, inclusive research in communication. Journal of Communication, 71(5), 764-784. https://doi.org/10.1093/joc/jqab029
  4. Renbarger, R., Stegenga, S., Lösch, T., Karcher, S., & Steltenpohl, C. (2021). Resources for practicing open science with qualitative research in education. https://www.oercommons.org/courseware/lesson/80058/overview 
  5. The Embassy of Good Science: "Privacy in research" 
  6. VandeVusse, A., Mueller, J., & Karcher, S. (2022). Qualitative Data Sharing: Participant Understanding, Motivation, and Consent. Qualitative Health Research, 32(1), 182-191. https://doi.org/10.1177/10497323211054058