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The Vulnerability of Immigrants in Research: Enhancing Protocol Development and Ethics Review

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Abstract

Vulnerabilities often characterize the availability of immigrant populations of interest in social behavioral science, public health, and medical research. Refugees, asylum seekers, and undocumented immigrants present unique vulnerabilities relevant to protocol development as well as ethics review procedures and criteria. This paper describes vulnerable populations in relation to the Belmont Report and US federal regulations for the protection of human subjects, both of which are commonly used in international research contexts. It argues for safeguards for immigrants comparable to protections for such populations as pregnant women, prisoners, and children. The paper further presents a two-part model for the review of protocols that involve immigrants. The model is intended to help identify the risks to immigrants associated with participation in research, and to suggest how researchers can responsibly frame studies and access to research participant immigrants through community-based, and/or non-governmental organizations that serve immigrants and immigrant communities. (152)

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Notes

  1. “Tourist researchers” are characterized by spending “very little time within in the community [of study] to understand the cultural, economic, political and social issues that delineate the context they are studying” (Kiluva-Ndunda 2005, 224).

  2. The South African National Health Act 61 of 2003 provides statutory authority for governance of “health research” and regulation of research ethics. The Act defines health research to include but not be limited to biological, psychological, or social welfare matters as regards humans, the causes of disease, effects of the environment on humans, methods to improve health care service delivery, new pharmaceuticals, medicines, inventions and devices, and technologies to improve health and health care. Review requirements are codified in Section 73 (2), http://www.acts.co.za/national-health-act-2003/index.html?73_health_research_ethics_committees.php.

  3. We use the term “NGOs” to refer to a wide range of charitable, community-based, non-profit/non-governmental organizations that may host or more actively enter into collaboration with researchers. Used in this way and for the purpose of common terminology, we recognize the term may be overly general to characterize a diverse range of organizations.

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Acknowledgments

The authors thank Roni Amit and Jo Hunter Adams for kindly reading and commenting on the paper, Sally Tobin for helping to conceptualize the proposed model for ethics review and decision-making, and the anonymous peer reviewers for their instructive comments and critiques. Gahlia Brogneri and Laura Wylie from the Adonis Musati Project (AMP) in Cape Town, South Africa helped identify the need and motivation for this paper, and the authors are especially grateful to Bobbie Fitchen and Wendy Williams for the introduction to AMP.

Disclaimer

The ideas and opinions expressed are those of the authors and are not endorsed by nor should they be attributed to the University of Cape Town, The Cancer Prevention Institute of California, and/or Sonoma State University.

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Authors and Affiliations

  1. Office of Research Integrity, Allan Cormack House, University of Cape Town, 2 Rhodes Ave., Mowbray, 7700, South Africa

    Robert H. McLaughlin

  2. Cancer Prevention Institute of California, Fremont, CA, USA

    Robert H. McLaughlin

  3. Sonoma State University, Rohnert Park, CA, USA

    Theresa Alfaro-Velcamp

  4. School of Public Health and Family Medicine, University of Cape Town, Observatory, 7925, South Africa

    Theresa Alfaro-Velcamp

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  1. Robert H. McLaughlin
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Correspondence to Robert H. McLaughlin.

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McLaughlin, R.H., Alfaro-Velcamp, T. The Vulnerability of Immigrants in Research: Enhancing Protocol Development and Ethics Review. J Acad Ethics 13, 27–43 (2015). https://doi.org/10.1007/s10805-015-9225-7

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