Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on sleep in brain health

LIVE: Thursday 2nd May 2024, 18:00-19:30 (CEST)

Quality sleep is essential for health. But what happens to our brains when sleep patterns are disturbed? Join our experts to explore the interplay between sleep disruption and neurological diseases, and the questions that you need to be asking your patients to help you prevent the harmful effects of sleep deprivation.
ADVANCED SEARCH
Log in
Top
Journal of Genetic Counseling
Published in: Journal of Genetic Counseling 6/2016

01-12-2016 | Original Research

Why Do Parents Want to Know their Child’s Carrier Status? A Qualitative Study

Authors: Danya F Vears, Clare Delany, John Massie, Lynn Gillam

Published in: Journal of Genetic Counseling | Issue 6/2016

Login to get access

Abstract

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.
Literature
Balfour-Lynn, I., Madge, S., & Dinwiddie, R. (1995). Testing carrier status in siblings of patients with cystic-fibrosis. Archives of Disease in Childhood, 72(2), 167–168.CrossRefPubMedPubMedCentral
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..
Beresford, B. (1994). Resources and strategies: how parents cope with the care of a disabled child. Journal of Child Psychology and Psychiatry and Allied Disciplines, 35(1), 171–209.CrossRef
Biesecker, B. B., & Peters, K. F. (2001). Process studies in genetic counseling: peering into the black box. American Journal of Medical Genetics Part C-Seminars in Medical Genetics, 106, 191–198.CrossRef
Borry, P., Goffin, T., Nys, H., & Dierickx, K. (2007). Attitudes regarding carrier testing in incompetent children: a survey of European clinical geneticists. European Journal of Human Genetics, 15(12), 1211–1217. doi:10.​1038/​sj.​ejhg.​5201909.CrossRefPubMed
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.CrossRefPubMedPubMedCentral
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.
British Medical Association Ethics Department (2012). Medical Ethics Today: The BMA’s handbook of ethics and law (3rd (Edition ed.). West Sussex: Wiley-Blackwell.CrossRef
Brunger, J. W., Murray, G. S., O’Riordan, M., Matthews, A. L., Smith, R. J. H., & Robin, N. H. (2000). Parental attitudes toward genetic testing for pediatric deafness. American Journal of Human Genetics, 67(6), 1621–1625.CrossRefPubMedPubMedCentral
Case, D. O., Andrews, J. E., Johnson, J. D., & Allard, S. L. (2005). Avoidance versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts. Journal of the Medical Library Association, 93(3), 353–362.PubMedPubMedCentral
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.
Downe-Wamboldt, B. (1992). Content analysis: method, applications, and issues. Health Care for Women International, 13, 313–321.CrossRefPubMed
Fanos, J., & Mackintosh, M. (1999). Never again joy without sorrow: the effect on parents of a child with Ataxia-Telangiectasia. American Journal of Medical Genetics, 87, 413–419.CrossRefPubMed
Farrimond, H. R., & Kelly, S. E. (2013). Public viewpoints on new non-invasive prenatal genetic tests. Public Understanding of Science, 22(6), 730–744.CrossRefPubMed
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.
Gillam, L. H. (2010). Children’s bioethics and the zone of parental discretion. Monash Bioethics Review, 29(2), 1–3.CrossRef
Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112.CrossRefPubMed
Henneman, L., Kooij, L., Bouman, K., & Ten Kate, L. P. (2002). Personal experiences of cystic fibrosis (CF) carrier couples prospectively identified in CF families. American Journal of Medical Genetics, 110(4), 324–331.CrossRefPubMed
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.CrossRefPubMedPubMedCentral
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.CrossRef
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..
Kai, J. (1996). Parents’ difficulties and information needs in coping with acute illness in preschool children: a qualitative study. British Medical Journal, 313(7063), 987–990.CrossRefPubMedPubMedCentral
Kharrazi, M., & Kharrazi, L. D. (2005). Delayed diagnosis of cystic fibrosis and the family perspective. Journal of Pediatrics, 147(3 Suppl), S21–S25.CrossRefPubMed
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:
Mack, J. W., & Joffe, S. (2014). Communicating about prognosis: ethical responsibilities of pediatricians and parents. Pediatrics, 133(Supp 1), S24–S30.CrossRefPubMed
Mack, J. W., Wolfe, J., Cook, E. F., Grier, H. E., Cleary, P. D., & Weeks, J. C. (2009). Peace of mind and sense of purpose as core existential issues among parents of children with cancer. Archives of Pediatrics & Adolescent Medicine, 163(6), 519–524.CrossRef
Maslow, A. H. (1963). The need to know and the fear of knowing. Journal of General Psychology, 68, 111–125.CrossRefPubMed
McCarthy Veach, P., Bartels, D. M., & LeRoy, B. S. (2007). Coming full circle: a reciprocal-engagement model of genetic counseling practice. Journal of Genetic Counseling, 16(6), 713–728.CrossRef
McConkie-Rosell, A., & DeVellis, B. (2000). Threat to parental role: a possible mechanism of altered self-concept related to carrier knowledge. Journal of Genetic Counseling, 9(4), 285–302.CrossRefPubMed
McConkie-Rosell, A., & Sullivan, J. A. (1999). Genetic counseling— Stress, coping, and the empowerment perspective. Journal of Genetic Counseling, 8, 345–357.CrossRefPubMed
McConkie-Rosell, A., Spiridigliozzi, G. A., Rounds, K., Dawson, D. V., Sullivan, J. A., Burgess, D., et al. (1999). Parental attitudes regarding carrier testing in children at risk for fragile X syndrome. American Journal of Medical Genetics, 82(3), 206–211.CrossRefPubMed
Miller, S. M. (1980). When is a little information a dangerous thing? Coping with stressful events by monitoring versus blunting. In S. Levine & H. Ursin (Eds.), Coping and health (pp. 145–169). New York: Plenum Press.CrossRef
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.
Resta, R. G. (2006). Defining and redefining the scope and goals of genetic counseling. American Journal of Medical Genetics Part C-Seminars in Medical Genetics, 142C, 269–275.CrossRef
Ross, L. F., Saal, H. M., David, K. L., Anderson, R. R., Pediatrics, A. A. o., & Genomics, A. C. o. M. G. a. (2013). Technical report: ethical and policy issues in genetic testing and screening of children. Genetics in Medicine, 15(3), 234–245.CrossRefPubMed
Rushton, C. (1994). Moral decision making by parents of infants who have life-threatening congenital disorders. Washington, DC: Catholic University of America.
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.
Schamber, L. (2000). Time-line interviews and inductive content analysis: their effectiveness for exploring cognitive behaviors. Journal of the American Society for Information Science, 51(8), 734–744.CrossRef
Shiloh, S., & Orgler-Shoob, M. (2006). Monitoring: a dual-function coping style. Journal of Personality, 74(2), 459–478.CrossRef
Shiloh, S., Avdor, O., & Goodman, R. M. (1990). Satisfaction with genetic counselling: dimensions and measurement. American Journal of Medical Genetics, 37, 522–529.CrossRefPubMed
Sollár, T., & Vanečová, J. (2012). Need for closure, ability to achieve closure and monitoring-blunting cognitive coping style. Studia Psychologica, 54(2), 137–142.
Sorensen, J. R., J.-G., T., & Newman, J. (2003). Communication about carrier testing within haemophilia a families. American Journal of Medical Genetics Part C-Seminars in Medical Genetics, 119, 3–10.CrossRef
The Japan Society of Human Genetics, Council Committee of Ethics, Matsuda, I., Niikawa, N., Sato, K., Suzumori, K., et al. (2001). Guidelines for genetic testing. Journal of Human Genetics, 46, 163–165.CrossRef
Thomas, S., Herbert, D., Street, A., Barnes, C., Boal, J., & Komesaroff, P. (2007). Attitudes towards and beliefs about genetic testing in the haemophilia community: a qualitative study. Haemophilia, 13(5), 633–641.CrossRefPubMed
Tluczek, A., Koscik, R. L., Farrell, P. M., & Rock, M. J. (2005). Psychosocial risk associated with newborn screening for cystic fibrosis: parents’ experience while awaiting the sweat-test appointment. Pediatrics, 115(6), 1692–1703.CrossRefPubMed
van Zuuren, F. J. (1997). Uncertainty in the information provided during genetic counseling. Patient Education and Counseling, 32, 129–139.CrossRefPubMed
Vears, D. F., Delany, C., & Gillam, L. (2015). Carrier testing in children: exploration of genetic health professionals’ practices in Australia. Genetics in Medicine, 17(5), 380–385.CrossRefPubMed
Woodgate, R. L. (2006). Living in a world without closure: reality for parents who have experienced the death of a child. Journal of Palliative Care, 22, 75–82.PubMed
Metadata
Title
Why Do Parents Want to Know their Child’s Carrier Status? A Qualitative Study
Authors
Danya F Vears
Clare Delany
John Massie
Lynn Gillam
Publication date
01-12-2016
Publisher
Springer US
Published in
Journal of Genetic Counseling / Issue 6/2016
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-016-9964-7

Other articles of this Issue 6/2016

Journal of Genetic Counseling 6/2016 Go to the issue

Original Research

DECIDE: a Decision Support Tool to Facilitate Parents’ Choices Regarding Genome-Wide Sequencing

Original Research

The Impact of Angelina Jolie (AJ)’s Story on Genetic Referral and Testing at an Academic Cancer Centre in Canada

Original Research

Impact of Huntington Disease Gene-Positive Status on Pre-Symptomatic Young Adults and Recommendations for Genetic Counselors

Original Research

The Psychological Impact of Prenatal Diagnosis and Disclosure of Susceptibility Loci: First Impressions of Parents’ Experiences

Original Research

How do Physicians Decide to Refer Their Patients for Psychiatric Genetic Counseling? A Qualitative Study of Physicians’ Practice

Letter to Editor

Experience of Social Media Support Group for BRCA Carriers