Publications and Resources
REACH Publications and Resources
Journal papers
- Zakayo SM, Njeru RW, Sanga G, et al. Vulnerability and agency across treatment-seeking journeys for acutely ill children: how family members navigate complex healthcare before, during and after hospitalisation in a rural Kenyan setting. Int J Equity Health. 2020;19(1):136. Published 2020, Aug 10. https://dx.doi.org/10.1186%2Fs12939-020-01252-x.
- Khirikoekkong N, Jatupornpimol N, Nosten S, Asarath S, Hanboonkunupakarn B, McGready R, Nosten F, Roest J, Parker M, Kelley M, Cheah PY. Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border, International Health, Volume 12, Issue 6, November 2020, Pages 551–559, https://doi.org/10.1093/inthealth/ihaa052.
- Nkosi B, Seeley J, Chimbindi N, Zuma T, Kelley M, Shahmanesh M, Managing ancillary care in resource-constrained settings: Dilemmas faced by frontline HIV prevention researchers in a rural area in South Africa, International Health, Volume 12, Issue 6, November 2020, Pages 543–550, https://doi.org/10.1093/inthealth/ihaa045.
- Muraya, K., Ogutu, M., Mwadhi, M. et al. Applying a gender lens to understand pathways through care for acutely ill young children in Kenyan urban informal settlements. Int J Equity Health 20, 17 (2021). https://doi.org/10.1186/s12939-020-01349-3
- Uddin, M.F., Molyneux, S., Muraya, K. et al. Gender-related influences on adherence to advice and treatment-seeking guidance for infants and young children post-hospital discharge in Bangladesh. Int J Equity Health 20, 64 (2021). https://doi.org/10.1186/s12939-021-01404-7
- Zakayo SM, Kimani MN, Sanga G, et al. Vulnerability, Agency, and the Research Encounter: Family Members’ Experiences and Perceptions of Participating in an Observational Clinical Study in Kenya. Journal of Empirical Research on Human Research Ethics. March 2021. https://doi.org/10.1177/15562646211005304
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Molyneux S, Sukhtankar P, Thitiri J, et al. Model for developing context-sensitive responses to vulnerability in research: managing ethical dilemmas faced by frontline research staff in Kenya. BMJ Global Health 2021;6: e004937.
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Nkosi B, Seeley J, Chimbindi N, Zuma T, Kelley M, Shahmanesh M. Putting research ethics in context: Rethinking vulnerability and agency within a research ethics case study on HIV prevention for young girls in South Africa, SSM - Qualitative Research in Health, Volume 2, April 2022, https://doi.org/10.1016/j.ssmqr.2022.100081.
Online resources & Galleries
- Day-to-day Dilemmas: An ethical guide for health systems researchers. RINGS, RESYST, REACH, Health Systems Global. 2019.
- Life at the Thai-Myanmar Border through the eyes of a front-line researcher. Online photography exhibition by Suphak Nosten, MORU/SMRU. 2020.
Blogs
- Vulnerability and health research: The REACH Project. Ariella Binik, Ethox Centre blog. April 2018.
- The vulnerability and health research paradox: Ethics, gender, trust and power. Sassy Molyneux & Sally Theobald, RINGS blog. June 2018.
Recommended Journal Papers
- Beima-Sofie K, John-Stewart G, Shah B, Wamalwa D, Maleche-Obimbo E, Kelley M. Using Health Provider Insights to Inform Pediatric HIV Disclosure: A Qualitative Study and Practice Framework from Kenya. AIDS Patient Care and STDs, Oct 2014;28(10):555-64.
- Chilton, Mariana, Jenny Rabinowich, Christina Council, and Jennifer Breaux. "Witnesses to hunger: Participation through photovoice to ensure the right to food." health and human rights (2009): 73- 85.
- Cho MK, Magnus D, Constantine M, Lee SS, Kelley M, Alessi S, et al. Attitudes toward risk and informed consent for research on medical practices: a cross-sectional survey. Ann Intern Med. 2015 May 19;162(10):690-6.
- Devries, K.M., Child, J.C., Elbourne, D., Naker, D., Heise, L. “I Never Expected that it would happen, coming to ask me such questions”: Ethical aspects of asking children about violence in resource poor settings.” Trials 16, (2015): 516.
- Engle, Patrice L., Sarah Castle, and Purnima Menon. "Child development: vulnerability and resilience." Social Science & Medicine 43, no. 5 (1996): 621-635.
- Garikapati, Supriya. "The impact of lending to women on household vulnerability and women’s empowerment: evidence from India." World Development 36, no. 12 (2008): 2620-2642.
- Kamuya, Dorcas M., Sally J. Theobald, Vicki Marsh, Michael Parker, Wenzel P. Geissler, and Sassy C. Molyneux. "The one who chases you away does not tell you go": silent refusals and complex power relations in research consent processes in Coastal Kenya. PloS one 10, no. 5 (2015).
- Kelley M, Brazg T, Lengua L, Martin- Herz SP, Rivin B, Wilfond B, Diekema D. Ethical Dilemmas in Research with Orphans and Vulnerable Children: A qualitative study on researcher experiences. Forthcoming, International Health, 2016.
- Kelley M, James C, Kraft SA, Korngiebel D, Wijangco I, Rosenthal E, et al. Patient perspectives on the learning health system: the importance of trust and shared decision making. Am J Bioeth.2015;15(9):4-17.’
- Kingori, Patricia. "Experiencing everyday ethics in context: frontline data collectors perspectives and practices of bioethics." Social science & medicine 98 (2013): 361-370.
- Lee SS, Kelley M, Cho M, Kraft SA, James C, Constantine M, et al. Adrift in the gray zone: IRB perspectives on research in the learning health system. AJOB Empirical Bioeth. In press, 2015.
- Luthar, Suniya S. "Vulnerability and resilience: A study of high-risk adolescents." Child Development 62, no. 3 (1991): 600-616.
- Mitchell, Claudia, Naydene DeLange, Relebohile Moletsane, Jean Stuart, and Thabisile Buthelezi. "Giving a face to HIV and AIDS: On the uses of photo-voice by teachers and community health care workers working with youth in rural South Africa." Qualitative Research in Psychology 2, no. 3 (2005): 257-270.
- Mosavel, Maghboeba, and Kimberly D. Sanders. "Photovoice: A needs assessment of African American cancer survivors." Journal of psychosocial oncology 28, no. 6 (2010): 630-643.
- Munger M. Resilience across cultures. British Journal of Social Work (2008) 38;218-235
- Nyambedha, Erick Otieno. "Ethical dilemmas of social science research on AIDS and orphanhood in Western Kenya." Social Science & Medicine 67, no. 5 (2008): 771-779.
- Seery, Mark D., E. Alison Holman, and Roxane Cohen Silver. "Whatever does not kill us: cumulative lifetime adversity, vulnerability, and resilience." Journal of Personality and Social Psychology 99, no. 6 (2010): 1025.
- Shannon, Kate, Thomas Kerr, Shari Allinott, Jill Chettiar, Jean Shoveller, and Mark W. Tyndall. "Social and structural violence and power relations in mitigating HIV risk of drug-using women in survival sex work." Social science & medicine 66, no. 4 (2008): 911-921.
- Thoits, Peggy A. "Stress, coping, and social support processes: Where are we? What next?" Journal of health and social behavior (1995): 53-79.
- Thompson, Suzanne C., and Shirlynn Spacapan. "Perceptions of control in vulnerable populations." Journal of Social Issues 47, no. 4 (1991): 1-21.
- Vig, Susan, Susan Chinitz, and Lisa Shulman. "Young children in foster care: Multiple vulnerabilities and complex service needs." Infants & Young Children 18, no. 2 (2005): 147- 160.
- Wang, Caroline C. "Photovoice: A participatory action research strategy applied to women's health." Journal of Women's Health 8, no. 2 (1999): 185-192. World Medical Association.
Recommended Reading
Books
- Goodin, Robert E. Protecting the vulnerable: A re-analysis of our social responsibilities. University of Chicago Press, 1985.
- MacKenzie C, Rogers W, Dodds S, eds. Vulnerability: New Essays in Ethics and Feminist Philosophy. Oxford University Press, 2014
Articles/Chapters
- Byers, Philippa. “Dependence and a Kantian Conception of Dignity a Value.” Theoretical Medicine and Bioethics 37, no.1 (2016): 61-69.
- Callahan, D. “The Vulnerability of the Human Condition.” In Rentorff, Kemp, and Mattson (Eds.) Bioethics and Biolaw, Volum II: Four Ethical Principles, Copenhagen (2000) chapter 9 115-122.
- Cho MK, Magnus D, Constantine M, Lee SS, Kelley M, Alessi S, et al. Attitudes toward risk and informed consent for research on medical practices: a cross-sectional survey. Ann Intern Med. 2015 May 19;162(10):690-6.
- Chwang, E. “Shared Vulnerabilities in Research.” The American Journal of Bioethics 14, no.2 (2014): 3-11.
- Denny, Colleen C., and Christine Grady. "Clinical research with economically disadvantaged populations." Journal of Medical Ethics 33, no. 7 (2007): 382-385.
- Devries, K.M., Child, J.C., Elbourne, D., Naker, D., Heise, L. “I Never Expected that it would happen, coming to ask me such questions”: Ethical aspects of asking children about violence in resource poor settings.” Trials 16, (2015): 516.
- Dodds, S. “Depending on Care: Recognition of Vulnerability and the Social Contribution of Care Provision.” Bioethics 21, no.9 (2007): 500-510.
- DuBois, J.M., Beskow, L., Campbell, J., DuGosh, K., Festinger, D., Hartz, S., James, R., Lidz, C. “Restoring Balance: A Consensus Statement on the Protection of Vulnerable Research Participants.” American Journal of Public Health 102, no.12 (2012): 2220-2225.
- Dunn M, Sheehan M, Hope T, M. P. Toward Methodological Innovation in Empirical Ethics Research. . Cambridge Quarterly of Healthcare Ethics 2012;21:466-80.
- Fisher, Celia B. "A relational perspective on ethics-in-science decision-making for research with vulnerable populations." Irb (1997): 1-4.
- Ganguli-Mitra, A., Biller-Andorno, N. “Vulnerability in Healthcare and Research Ethics.” In Chadwick, R., Have, H.T., and Meslin, E.M. (Eds.) The SAGE Handbook of Health Care Ethics: Core and Emerging Issues, SAGE 2011. Pgs. 239-250.
- Grady, C. “Vulnerability in Research: Individuals with Limited Financial and/or Social Resources.” Journal of Law, Medicine, & Ethics 37, no.1 (2009): 19-27.
- Harosh, S. “Identifying Harms.” Bioethics 26, no.9 (2012): 493-498.
- Hauge, H.M. “Inclusive and Relevant Language: the Use of the Concepts of Autonomy, Dignity and Vulnerability in Different Contexts.” Medicine, Health Care and Philosophy 13, no.3 (2010): 203-213.
- Heerman, W.J., White, R.O., Barkin, S.L. “Advancing Informed Consent for Vulnerable Populations.” Pediatrics 135, no.3 (2015): e562-e564.
- Hoffmaster, B. “What Does Vulnerability Mean?” Hastings Center Report 36, no.2 (2006): 38-45.
- Hurst, Samia A. "Vulnerability in research and health care; describing the elephant in the room?" Bioethics 22, no. 4 (2008): 191-202.
- Kelley M, Brazg T, Lengua L, Martin- Herz SP, Rivin B, Wilfond B, Diekema D. Ethical Dilemmas in Research with Orphans and Vulnerable Children: A qualitative study on researcher experiences. Forthcoming, International Health, 2016.
- Kelley M, James C, Kraft SA, Korngiebel D, Wijangco I, Rosenthal E, et al. Patient perspectives on the learning health system: the importance of trust and shared decision making. American Journal of Bioethics 15, no.6 (2015): 4-17.
- Kerber, KJ, de Graft-Johnson, JE, Bhutta Z, Okong P, Starrs A, Lawn JE. Continuum of care for maternal, newborn, and child health: from slogan to service delivery. The Lancet 370, no. 9595 (2007):1358-1369.
- Kipnis, K. “Seven Vulnerabilities in the Pediatric Research Subject.” Theoretical Medicine and Bioethics 24, no.2 (2003): 107-120.
- Kipnis, K. “Vulnerability in Research Subjects: A Bioethical Taxonomy.” In: National Bioethics Advisory Commission [NBAC]. Ethical and Policy Issues in Research Involving Human Participants. Volume II: Commissioned Papers. Rockville, MD: National Bioethics Advisory Commission [NBAC]; 2001: G1-G13.
- Kottow, Michael H. "The vulnerable and the susceptible." Bioethics 17, no. 5-6 (2003): 460- 471.
- Lange, Margaret Meek, Wendy Rogers, and Susan Dodds. "Vulnerability in research ethics: away forward." Bioethics 27, no. 6 (2013): 333-340.
- Lee SS, Kelley M, Cho M, Kraft SA, James C, Constantine M, et al. Adrift in the gray zone: IRB perspectives on research in the learning health system. AJOB Empirical Bioeth. In press, 2015.
- Levine, C, Ruth F, Christine G, Hammerschmidt D, Eckenwiler L, and Sugarman J. "The limitations of “vulnerability” as a protection for human research participants." The American Journal of Bioethics 4, no. 3 (2004): 44-49.
- Lotz, Mianna. “Vulnerability and Resilience: a Critical Nexus.” Theoretical Medicine and Bioethics 37, no.1 (2016):45-59.
- Luna F. Elucidating the Concept of Vulnerabilitiy: Layers not Labels. International Journal of Feminist Approaches to Bioethics 2, no.1 (2009):121-139.
- Luna, F, Vanderpoel, S. “Not the Usual Suspects: Addressing Layers of Vulnerability” Bioethics 27, no.6 (2013): 325-332.
- Lyerly AD, Little MO, Faden R. The second wave: Toward responsible inclusion of pregnant women in research. International Journal of Feminist Approaches to Bioethics 2008;1:5-22.
- Matthews, S, Tobin, B. “Human Vulnerability in Medical Contexts.” Theoretical Medicine and Bioethics 37, no.1 (2016): 1-7.
- Macklin, R. “Bioethics, Vulnerability, and Protection.” Bioethics 17, no.5-6 (2003): 472-486.
- Martin, A.K. “Resolving the Conflict: Clarifying ‘Vulnerability’ in Health Care Ethics.” Kennedy Institute of Ethics Journal 24, no.1 (2014): 51-72.
- Mastroianni AC FR, Federman D. Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies. IOM 1994. McNeil, GF (2015) A Failed Trial in Africa Raises Questions about How to Test HIV Drugs. New York Times. New York, The New York Times Company.
- Mayes, C., Blakely, B., Kerridge, I., Komesaroff, P., Olver, I., Lipworth, W. “On the Fragility of Medical Virtue in a Neoliberal Context: The Case of Commercial Conflicts of Interest in Reproductive Medicine.” Theoretical Medicine and Bioethics 37, no.1 (2016): 97-111.
- McConnell, D. “Narrative Self-Constitution and Vulnerability to Co-Authoring.” Theoretical Medicine and Bioethics 37, no.1 (2016): 29-43.
- Nickel, P.J. “Vulnerable Populations in Research: The Case of the Seriously Ill.” Theoretical Medicine and Bioethics 27, no.3 (2006): 245-264.
- Nyambedha, Erick Otieno. "Ethical dilemmas of social science research on AIDS and orphanhood in Western Kenya." Social Science & Medicine 67, no. 5 (2008): 771-779.
- Oakley, J. “Diagnosing True Virtue? Remote Scenarios, Warranted Virtue Attributions, and Virtuous Medical Practice.” Theoretical Medicine and Bioethics 37, no.1 (2016): 85-96.
- Quilter, JG. “The New Enhancement Technologies and the Place of Vulnerability in our Lives.” Theoretical Medicine and Bioethics 37, no.1 (2016): 9-27.
- Rendtorff, J.D. “Basic Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity, and Vulnerability – Towards a Foundation of Bioethics and Biolaw.” Medicine, Health Care and Philosophy 5, no.3 (2002):235-244.
- Rogers, W.A., Walker, M.J. “Fragility, Uncertainty, and Healthcare.” Theoretical Medicine and Bioethics 37, no.1 (2016): 71-83.
- Rogers, W., Mackenzie, C., Dodds, S. “Why Bioethics Needs A Concept of Vulnerability.” International Journal of Feminist Approaches to Bioethics 5, no.2 (2012): 11-38.
- Schroeder, D., Genefas, E. “Vulnerability: Too Vague and Too Broad.” Cambridge Quarterly of Healthcare Ethics 18, no. 2 (2009):113-121.
- Schuklenk, U. “Protecting the Vulnerable: Testing Times for Clinical Research Ethics.” Social Science and Medicine 51, no.6 (2000): 969-977.
- Solbakk, J.H. “Vulnerability: A Futile or Useful Principle in Healthcare Ethics?” In Chadwick, R., Have, H.T., and Meslin, E.M. (Eds.) The SAGE Handbook of Health Care Ethics: Core and Emerging Issues, SAGE, 2011: 228-238.
- Stone, T.H. “Currents in Contemporary Ethics.” Journal of Law, Medicine, and Ethics. 31, no.1 (2003):149- 153.
- Tavaglione, N., Martin, A.K., Mezger, N., Durieux-Paillard, S., Francois, A., Jackson, Y., and Hurst, S.A. “Fleshing out Vulnerability.” Bioethics 29, no.2 (2015): 98-107.
- Wrigley, A. “An Eliminativist Approach to Vulnerability.” Bioethics 29, no.2 (2015):478-487.
- Zion D, Gillam L, Loff B. The Declaration of Helsinki, CIOMS and the ethics of research on vulnerable populations. Nature Medicine 2000;6:615-7.
Recommended Guidelines
- Nuffield Council on Bioethics. The ethics of research related to health care in developing countries. London: Nuffield Council on Bioethics, 2002.
- Declaration of Helsinki, 2013. World Medical Association. Ethical Principles for Medical Research Involving Human Subjects. http://www.wma.net/en/30publications/10policies/b3/
- The Belmont Report (1979). Ethical Principles and Guidelines for the Protection of Human Subjects of Research. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/
- Council for International Organizations of Medical Sciences (CIOMS) in collaboration with the World Health Organization (WHO). 2016. International Ethical Guidelines for Health-Related Research involving Humans. Geneva, Switzerland. Available for download at: http://www.cioms.ch/
- National Commission for the Protection of Human Subjects, The Belmont Report. (1979). The report to the Secretary of the Department of Health, Education and Welfare.