Ethical Issues in Family Research

Bibliography developed by Dr. Kathleen Knafl, Professor, School of Nursing, University of North Carolina at Chapel Hill, USA 

Download the full family research bibliography

Updated October 2023

Bailey, D., Raspa, M., Wheeler, A., Edwards, A., Bishop, E., Bann, C., Borasky, D., & Applebaum, P. (2014). Parent ratings of ability to consent to clinical trials in Fragile X Syndrome. Journal of Empirical Research in Human Research Ethics, 9, 18-28. https://doi.org/10.1177/1556264614540591.

Botkin, J. (2001). Protecting the privacy of family members in survey and pedigree research. Journal of the American Medical Association, 285, 207-211. https://doi.org/10.1001/jama.285.2.207.

Broome, M., Richards, D., & Hall, J. (2001). Children in research: The experience of ill children and adolescents. Journal of Family Nursing, 7(1), 32-49. https://doi.org/10.1177/107484070100700103.

Chan, T., Teram, E., & Shaw, I. (2017). Balancing methodological rigor and the needs of research participants: A debate on alternative approaches to sensitive research. Qualitative Health Research, 27, 260-270. https://doi.org/10.1177/1049732315605272.

Crane, S., Haase, J. E., & Hickman, S. E. (2019). Parental experiences of child participation in a phase I pediatric oncology clinical trial: “We don’t have time to waste”. Qualitative Health Research, 29(5), 632-644. https://doi.org/10.1177/1049732318766513. 

Liaschenko, J., & Underwood, S. (2001) Children in research: Fathers in cancer research – meaning and reasons for participation. Journal of Family Nursing, 7(1), 71-91. https://doi.org/10.1177/107484070100700105.

Margolin, G., Chien, D., Duman, S. E., Fauchier, A., Gordis, E. B., Oliver, P. H., Ramos, M. C., & Vickerman, K. A. (2005). Ethical issues in couple and family research. Journal of Family Psychology, 19(1), 157–167. https://doi.org/10.1037/0893-3200.19.1.157.

Mellor, R., Slaymaker, E., & Cleland, J. (2013). Recognizing and overcoming challenges of couple interview research. Qualitative Health Research, 23(10), 1399-1407. https://doi.org/10.1177/1049732313506963.

Pletsch, P., & Stevens, P. (2001). Children in research: Informed consent and critical factors affecting mothers. Journal of Family Nursing, 7, 50-70. https://doi.org/10.1177/107484070100700104.

Sauder, S., Stein, R., Feinberg, E., Bauchner, H., Banks, M., & Silverstein, M. (2011). When the subject is more than just the subject: Two case studies of family involvement in human subjects research. Journal of Empirical Research on Research Ethics, 6, 33-38. https://doi.org/10.1525/jer.2011.6.1.33.

Snethen, J., & Broome, M. (2001). Children in research: The experiences of siblings in research is a family affair. Journal of Family Nursing, 7(1), 92-110. https://doi.org/10.1177/107484070100700106.

Snethen, J., Broome, M., Knafl, K., Deatrick, J., & Angst, D. (2006). Family patterns of decision making in clinical trials. Research in Nursing and Health, 29, 223-232. https://doi.org/10.1002/nur.20130.

Tabor, H. K., Brazg, T., Crouch, J., Namey, E. E., Fullerton, S. M., Beskow, L. M., & Wilfond, B. S. (2011). Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment. Journal of Empirical Research on Human Research Ethics, 6(4), 41-52. https://doi.org/10.1525/jer.2011.6.4.41.

Ummel, D., & Achille, M. (2016). How not to let secrets out when conducting qualitative research with dyads. Qualitative Health Research, 26(6), 807-815. https://doi.org/10.1177/1049732315627427.

Weaver, M.S., Bell, C.J., Diver, J.L., Jacobs, S., Lyon, M.E., Mooney-Doyle, K., Newman, A.R., Slutsman, J., & Hinds, P.S. (2018). Surprised by benefit in pediatric palliative care research. Cancer Nursing, 41(1), 86-87. https://doi.org/10.1097/NCC.0000000000000576.

Voltelen, B., Konradsen, H., & Østergaard, B. (2018). Ethical considerations when conducting joint interviews with close relatives or family: an integrative review. Scandinavian Journal of Caring Sciences, 32(2), 515-526. https://doi.org/10.1111/scs.12535.