Abstract
Only somewhat recently has a specific literature emerged focused on the ethics of engaging patient and community stakeholders in health research. This literature is informed by a broad range of disciplinary frameworks and norms. It also overlaps with – and diverges from – traditional research ethics scholarship in interesting and important ways. This volume is an effort to bring together, in one place, important perspectives on the ethics of stakeholder engagement in health research. Here, ethics, patient and community stakeholders, and health-related research are all conceptualized broadly.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Similar content being viewed by others
References
Anderson, E. E., & Spellecy, R. (2021). Research that engages community and patient partners. In A. S. Iltis & D. MacKay (Eds.), Oxford handbook of research ethics. Oxford.
Brown, B., Taylor, J., Dubé, K., Kuzmanović, D., Long, Y., & Marg, L. (2021). Ethical reflections on the conduct of HIV research with community members: A case study. Journal of Empirical Research on Human Research Ethics, 16(1–2), 65–77.
Clinical and Translational Science Awards Consortium, Community Engagement Key Function Committee Task Force on the Principles of Community Engagement. (2011). Principles of community engagement. US Government Printing Office.
Israel, B. A., Schulz, A. J., Parker, E. A., & Becker, A. B. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19(1), 173–202.
Jones, J. H. (2008). The Tuskegee syphilis experiment. In The Oxford textbook of clinical research ethics (pp. 86–96). Oxford University Press.
Mikesell, L., Bromley, E., & Khodyakov, D. (2013). Ethical community-engaged research: A literature review. American Journal of Public Health, 103(12), e7–e14.
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont Report: Ethical principles and guidelines for the protection of human subjects of research. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html#xethical.
Reverby, S. M. (2012). Ethical failures and history lessons: The US Public Health Service research studies in Tuskegee and Guatemala. Public Health Reviews, 34(1), 1–18.
Robinson, W. M., & Unruh, B. T. (2008). The hepatitis experiments at the Willowbrook State School. In The Oxford textbook of clinical research ethics (pp. 80–85). Oxford University Press.
Shavers, V. L., Lynch, C. F., & Burmeister, L. F. (2000). Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies. Journal of the National Medical Association, 92(12), 563.
Spellecy, R., & Anderson, E. E. (2021). Patient and community engagement. In E. Bankert, B. Gordon, E. Hurley, & S. Shriver (Eds.), IRB management and function. Jones and Bartlett.
Wallerstein, N., & Duran, B. (2017). The theoretical, historical and practice roots of CBPR. In Community-based participatory research for health: Advancing social and health equity (pp. 17–29). Wiley.
Wilson, R. F. (2010). The death of Jesse Gelsinger: New evidence of the influence of money and prestige in human research. American Journal of Law & Medicine, 36(2–3), 295–325.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2023 The Author(s), under exclusive license to Springer Nature Switzerland AG
About this chapter
Cite this chapter
Anderson, E.E. (2023). Introduction: What We Talk About When We Talk About the Ethics of Engaging Patient and Community Stakeholders in Health Research. In: Anderson, E.E. (eds) Ethical Issues in Community and Patient Stakeholder–Engaged Health Research. Philosophy and Medicine, vol 146. Springer, Cham. https://doi.org/10.1007/978-3-031-40379-8_1
Download citation
DOI: https://doi.org/10.1007/978-3-031-40379-8_1
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-031-40378-1
Online ISBN: 978-3-031-40379-8
eBook Packages: Religion and PhilosophyPhilosophy and Religion (R0)