Why Do Parents Want to Know their Child’s Carrier Status? A Qualitative Study
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When a child is identified with a genetic condition, some parents want to know the carrier status of their other children. There has been little exploration of why parents want this information. To address this question, semi-structured interviews were conducted with parents of 32 children with cystic fibrosis, haemophilia, and Duchenne muscular dystrophy who wanted to know the carrier status of their other children. Data was analyzed using inductive content analysis. Parents expressed a range of reasons for desiring their child’s carrier status, which fell into two broad categories: 1) benefit for the parents and 2) perceived benefit to the child. Parents discussed the desire for certainty and peace of mind derived from having knowledge of their child’s status. The most commonly expressed reason for wanting to know their child’s carrier status was in order to communicate the information to their child to provide them with the ability to make informed reproductive decisions. These reasons suggest parents are seeking their children’s carrier information both as a coping strategy and to communicate carrier information as part of their role as a parent. This has important implications for genetic counseling practice, especially as international guidelines generally recommend against carrier testing in children.
KeywordsGenetic testing Carrier testing Children Parenting Information-seeking Coping Communication
Danya Vears acknowledges the support of the Brocher Foundation (Geneva, Switzerland), the Research Fund Flanders (Belgium) and the Ministère de l’Économie, de l’Innovation et des Exportations du Québec, PSR-SIIRI-850 (Canada).
Compliance with Ethical Statement
Danya Vears acknowledges the financial support of Research Fund Flanders (Belgium) and the Ministère de l’Économie, de l’Innovation et des Exportations du Québec, PSR-SIIRI-850 (Canada).
Conflict of Interest
Danya Vears, Clare Delany, John Massie and Lynn Gillam declare that they have no conflict of interest.
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). This study was approved by the Human Research Ethics Committees at The Royal Children’s Hospital, Victoria (ID 33040 A), The Hunter New England Local Health District, New South Wales (ID 13/08/21/5.12), and The Women’s and Children’s Hospital, South Australia (HREC/12/WCHN/114; SSA/13/WCHN 130). Informed consent was obtained from all patients for being included in the study.
No animal studies were carried out by the authors for this article.
- American Medical Association. (1995). Testing children for genetic status. http://www.ama-assn.org.
- Barnes, C. (1998). Testing children for balanced chromosomal translocations: parental views and experiences. In A. J. Clarke (Ed.), The genetic testing of children (pp. 51–60). Oxford: BIOS Scientific Publishers Ltd..Google Scholar
- Botkin, J. R., Belmont, J. W., Berg, J. S., Berkman, B. E., Bombard, Y., Holm, I. A., et al. (2015). Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics, 97, 6–21.CrossRefPubMedPubMedCentralGoogle Scholar
- British Medical Association (1998). Testing of adults and children with a family history of genetic disorder Human genetics: choice and responsibility (pp. 61–99). Oxford: Oxford University Press.Google Scholar
- Committee for Public Relations and Ethical Issues of the German Society of Human Genetics. (1995). Statement on genetic diagnosis in children and adolescents. Retrieved from http://www.gfhev.de
- Davis, D. S. (1997). Genetic dilemmas and the child's right to an open future. Rutgers Law Journal, 28, 548–592.Google Scholar
- Feinberg, J. (1980). The child’s right to an open future. In W. Aiken & H. L. Follette (Eds.), Whose child? Children’s rights, parental authority, and state power Totowa. N.J.: Littlefield, Adams.Google Scholar
- Hinds, P. S., Oakes, L., Hicks, J., Powell, B., Srivastava, D. K., Spunt, S. L., et al. (2009). “Trying to be a good parent” as defined by interviews with parents who made phase I, terminal care, and resuscitation decisions for their children. Journal of Clinical Oncology, 27(35), 5979–5985.CrossRefPubMedPubMedCentralGoogle Scholar
- Human Genetic Society of Australasia. (2008). Process of genetic counselling. Retrieved from https://www.hgsa.org.au/documents/item/13
- James, C. A., Holtzman, N. A., & Hadley, D. W. (2003). Perceptions of reproductive risk and carrier testing among adolescent sisters of males with chronic granulomatous disease. American Journal of Medical Genetics Part C-Seminars in Medical Genetics, 119C(1), 60–69. doi: 10.1002/ajmg.c.10007.CrossRefGoogle Scholar
- Jolly, A., Parsons, E. P., & Clarke, A. J. (1998). Identifying carriers of balanced chromosomal translocations: interviews with family members. In A. J. Clarke (Ed.), The genetic testing of children (pp. 61–90). Oxford: BIOS Scientific Publishers Ltd..Google Scholar
- Lucassen, A., Clancy, T., Montgomery, J., Clarke, A., Hall, A., Fryer, A.,... Parker, M. (2010). Report on the Genetic Testing of Children. Retrieved from Birmingham:Google Scholar
- McConkie-Rosell, A., Spiridigliozzi, G. A., Iafolla, T., Tarleton, J., & Lachiewicz, A. M. (1997). Carrier testing in the fragile X syndrome: attitudes and opinions of obligate carriers. American Journal of Medical Genetics, 68(1), 62–69. doi: 10.1002/(sici)1096-8628(19970110)68:1<62::aid-ajmg12>3.0.co;2-m.CrossRefPubMedGoogle Scholar
- Pain, H. (1999). Coping with a child with disabilities from the parents’ perspective: the function of information. Child: Care, Health & Development, 25(4), 299–312.Google Scholar
- Rushton, C. (1994). Moral decision making by parents of infants who have life-threatening congenital disorders. Washington, DC: Catholic University of America.Google Scholar
- Saleeby, D. (1997). Chapter 1. Introduction: power in the people. In D. Saleeby (Ed.), The strengths perspective in social work practice. White plains: Longman publishers.Google Scholar
- Scott, J., & Marshall, G. (2009). A Dictionary of Sociology Social constructionism Retrieved from http://www.oxfordreference.com/views/ENTRY.html?subview=Main&entry=t88.e2118
- Sollár, T., & Vanečová, J. (2012). Need for closure, ability to achieve closure and monitoring-blunting cognitive coping style. Studia Psychologica, 54(2), 137–142.Google Scholar