Abstract
Three case studies are presented to further our understanding of how responsibility is negotiated in families when making decisions about genetic risk. These draw on a model of responsibility generated in a study of reproductive decision-making in families facing Huntington disease (HD) to illustrate the impact of prenatal testing on this process. This involves analyzing: how people present themselves as acting responsibly whether or not they utilize genetic testing; who they feel responsible to in their family and elsewhere; the impact that testing has on these relationships; and, how negotiating responsibility changes over time with repeated use of prenatal testing, changing risk status and maturational changes. Two key findings are: how decision-making is perceived can become as important as what is decided; and, how responsibility is negotiated depends on which of these relationships are prioritized. Implications of the findings for clinical practice are noted and suggestions made for further applications of the model.
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References
Cox, S. M. (Ed.). (2002). Personal perspectives on genetic testing for Huntington disease. Cambridge, Ontario: Huntington Society of Canada.
Cox, S. M. (2003). Stories in decisions: How at risk individuals decide to request predictive testing for Huntington disease. Qual Sociol, 26, 257–280.
de Die, C., & Heurckmans, N. (2002). Case histories about preimplantation genetic diagnosis. In G. Evers-Kiebooms, M. W. Zoeteweij, & P. S. Harper (Eds.), Prenatal testing for late-onset neurogenetic diseases (pp. 119–127). Oxford: Bios Scientific Publishers Limited.
Downing, C. (2002). Reproductive decision-making in families at risk for Huntington’s disease: Perceptions of responsibility. An unpublished dissertation submitted to the University of Cambridge for the Degree of Doctor of Philosophy.
Evers-Kiebooms, G., Zoeteweij, M. W., & Harper, P. S. (Eds.). (2002). Prenatal testing for late-onset neurogenetic diseases. Oxford: Bios Scientific Publishers Limited.
Finch, J., & Mason, J. (1993). Negotiating family responsibilities. London: Tavistock Routledge.
Hallowell, N. (1999). Doing the right thing: Genetic risk and responsibility. Sociol Health Illness, 21, 597–621.
Harper, P. S. (2002). Conclusion: Prenatal testing for late-onset genetic disorders: Evidence and insights from Huntington’s disease. In G. Evers-Kiebooms, M. W. Zoeteweij, & P. S. Harper (Eds.), Prenatal testing for late-onset neurogenetic diseases (pp. 203–214). Oxford: Bios Scientific Publishers Limited.
Harper, P. S., Quarrell, O. W. J., & Youngman, S. (1988) Huntington’s disease: Prediction and prevention. Philos Trans Roy Soc, London, B319, 285–298.
Harper, P. S., Lim, C., & Craufurd, D. (2000). Ten years of presymptomatic testing for Huntington’s disease: The experience of the UK Huntington’s Disease Prediction Consortium. J Med Genet, 37, 567–571.
Hayden, M. R. (2000). Predictive testing for Huntington’s disease: The calm after the storm. Lancet, 356, 1944.
Huniche, L. (2003). Learning from the voiceless. New Genet Soc, 22, 257–269.
Jacopini, G., Decruyenaere, M., Harper, R., & Simpson, S. A. (2002). Case histories of prenatal testing for Huntington’s disease. In G. Evers-Kiebooms, M. W. Zoeteweij, & P. S. Harper (Eds.), Prenatal testing for late-onset neurogenetic diseases (pp. 11–24). Oxford: Bios Scientific Publishers Limited.
Kay, E., & Kingston, H. (2002). Feelings associated with being a carrier and characteristics of reproductive decision making in women known to be carriers of X-linked conditions. J Health Psychol, 7, 169–181.
Kenen, R. (1994). The Human Genome Project: Creator of the potentially sick, potentially vulnerable and potentially stigmatized? In L. Robinson (Ed.), Life and death under high technology medicine (pp. 49–64). Manchester: Manchester University Press.
Kenen, R. H. (1996). The at-risk health status and technology: A diagnostic invitation and the ‘gift’ of knowing. Soc Sci Med, 42, 1545–1553.
Kessler, S. (1988). Invited essay on the psychological aspects of genetic counseling: V. Preselection: A family coping strategy in Huntington disease. Am J Med Genet, 31, 617–621.
Maat-Kievit, A., Vegter-van der Vlis, M., Zoeteweij, M., Losekoot, M., van Haeringen, A., Kanhai, H., et al. (1999). Experience in prenatal testing for Huntington’s disease in the The Netherlands: Procedures, results and guidelines (1987–1997). Prenat Diagn, 19, 450–457.
McConkie-Rosell, A., & Sullivan, J. A. (2003). Editorial notes. J Genet Couns, 12, 1–3.
Millan, F. A., Curtis, A., Mennie, M., Holloway, S., Boxer, M., Fard, M. J. W., et al. (1989). Prenatal exclusion testing for Huntington’s disease: A problem of too much information. J Med Genet, 26, 83–85.
Nelson, H. L., & Nelson, J. L. (1995). The patient in the family: An ethics of medicine and family. London: Routledge.
Quaid, K., & Wesson, M. K. (1995). Exploration of the effects of predictive testing for Huntington disease on intimate relationships. Am J Med Genet, 45, 46–51.
Richards, T. J., & Richards, L. (1994). Using computers in qualitative research. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (pp. 445–462). Thousand Oaks: Sage Publications.
Roche, M. I. (2003). Genetic Counseling: Myths and misconceptions. NSGC Press Release. http://www.nsgc.org/newsroom/release_myths_misconseptions.asp
Robertson, A. (2000). Embodying risk, embodying political responsibility: Women’s accounts of risks for breast cancer. Health, Risk Soc, 2, 219–235.
Sarangi, S., Bennert, K., Howell, L., Clarke, A., Harper, P., & Gray, J. (2004). Initiation of reflective frames in counseling for Huntington’s disease predictive testing. J Genet Couns, 13, 135–155.
Simpson, S. A., & Harding, A. E. (1993). Predictive testing for Huntington’s disease: After the gene. J Med Genet, 30, 1036–1038.
Simpson, S. A., & Harper, P. S. (2001). Prenatal testing for Huntington’s disease: Experience within the UK 1994–1998. Letter to the Editor. J Med Genet, 38, 333–335.
Smith, J. A., Stephenson, M., & Quarrel, O. (1999). Factors influencing the decision whether to take the genetic test for Huntington’s disease: An interpretative phenomenological analysis. Unpublished paper presented at the Qualitative Methods and Genetics Group, Centre for Family Research, University of Cambridge.
Sobel, S. K., & Cowan, D. B. (2000). Impact of genetic testing for Huntington’s disease on the family system. Am J Med Genet, 90, 49–59.
Tassiker, R., Savalescu, J., Skene, L., Marshall, P., Fitzgerald, L., & Delatycki, M. (2003). Prenatal diagnostic requests for Huntington disease where the at-risk father does not wish to know his genetic status: Clinical, legal and ethical viewpoint. Br Med J, 326, 331–333.
Taylor, S. D. (2004). Predictive genetic test decisions for Huntington’s disease: Context, appraisal and new moral imperatives. Soc Sci Med, 58, 137–149.
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Downing, C. Negotiating Responsibility: Case Studies of Reproductive Decision-Making and Prenatal Genetic Testing in Families Facing Huntington Disease. J Genet Counsel 14, 219–234 (2005). https://doi.org/10.1007/s10897-005-0619-3
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DOI: https://doi.org/10.1007/s10897-005-0619-3