Whether, When, and How to Communicate Genetic Risk to Minors: 'I Wanted More Information but I Think They Were Scared I Couldn't Handle It'

Overview

Journal J Genet Couns

Publisher Wiley

Specialty Genetics

Date 2020 Jul 24

PMID 32700788

Citations 4

Authors

Kelsey Stuttgen

Allison McCague

Juli Bollinger

Rachel Dvoskin

Debra Mathews

Affiliations

Soon will be listed here.

Abstract

Genetic test results are often relevant not only to persons tested, but also to their children. Questions of whether, when, and how to disclose parental test results to children, particularly minors, can be difficult for parents to navigate. Currently, limited data are available on these questions from the perspective of minors. In this qualitative study, semi-structured interviews were conducted with parents affected by or at risk for hereditary cancer (N = 17) or Huntington's disease (N = 14) and their mature minor children aged 15-17 (N = 34). Parents and mature minors were interviewed separately. Genetic counselors (GCs; N = 19) were also interviewed. Most parents interviewed wanted to protect minors from genetic risk information (GRI) and feared minors would not be able to handle GRI. However, most mature minors reported they did not receive enough information and wished their parent was more forthcoming. Parents recommended taking time to process one's own test results before communicating with minors, and mature minors recommended parents communicate GRI in an honest, hopeful way. Most parents and GCs felt additional resources on communicating with minors about GRI and various genetic conditions are needed. This study includes the experiences and perspectives of a well-informed cohort, and results should be taken into careful consideration by parents, GCs, and others who are faced with communicating GRI to minors.

Citing Articles

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References

Dubey A, Gupta U, Jain S . Breast cancer statistics and prediction methodology: a systematic review and analysis. Asian Pac J Cancer Prev. 2015; 16(10):4237-45. DOI: 10.7314/apjcp.2015.16.10.4237. View

Plumridge G, Metcalfe A, Coad J, Gill P . Parents' communication with siblings of children affected by an inherited genetic condition. J Genet Couns. 2011; 20(4):374-83. DOI: 10.1007/s10897-011-9361-1. View

Forrest G, Plumb C, Ziebland S, Stein A . Breast cancer in young families: a qualitative interview study of fathers and their role and communication with their children following the diagnosis of maternal breast cancer. Psychooncology. 2008; 18(1):96-103. DOI: 10.1002/pon.1387. View

McConkie-Rosell A, Spiridigliozzi G, Melvin E, Dawson D, Lachiewicz A . Living with genetic risk: effect on adolescent self-concept. Am J Med Genet C Semin Med Genet. 2008; 148C(1):56-69. PMC: 2756030. DOI: 10.1002/ajmg.c.30161. View

Forrest Keenan K, van Teijlingen E, McKee L, Miedzybrodzka Z, Simpson S . How young people find out about their family history of Huntington's disease. Soc Sci Med. 2009; 68(10):1892-900. DOI: 10.1016/j.socscimed.2009.02.049. View

Gorrie A, Archibald A, Ioannou L, Curnow L, McClaren B . Exploring approaches to facilitate family communication of genetic risk information after cystic fibrosis population carrier screening. J Community Genet. 2017; 9(1):71-80. PMC: 5752656. DOI: 10.1007/s12687-017-0337-1. View

Aktan-Collan K, Kaariainen H, Kolttola E, Pylvanainen K, Jarvinen H, Haukkala A . Sharing genetic risk with next generation: mutation-positive parents' communication with their offspring in Lynch Syndrome. Fam Cancer. 2010; 10(1):43-50. DOI: 10.1007/s10689-010-9386-x. View

Ford D, Easton D, Stratton M, Narod S, Goldgar D, Devilee P . Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium. Am J Hum Genet. 1998; 62(3):676-89. PMC: 1376944. DOI: 10.1086/301749. View

Appelbaum P, Parens E, Waldman C, Klitzman R, Fyer A, Martinez J . Models of consent to return of incidental findings in genomic research. Hastings Cent Rep. 2014; 44(4):22-32. PMC: 4107028. DOI: 10.1002/hast.328. View

10.

Metcalfe A, Plumridge G, Coad J, Shanks A, Gill P . Parents' and children's communication about genetic risk: a qualitative study, learning from families' experiences. Eur J Hum Genet. 2011; 19(6):640-6. PMC: 3097166. DOI: 10.1038/ejhg.2010.258. View

11.

Wilkins E, Archibald A, Sahhar M, White S . "It wasn't a disaster or anything": Parents' experiences of their child's uncertain chromosomal microarray result. Am J Med Genet A. 2016; 170(11):2895-2904. DOI: 10.1002/ajmg.a.37838. View

12.

Werner-Lin A, Merrill S, Brandt A, Barnett R, Matloff E . Talking with Children About Adult-Onset Hereditary Cancer Risk: A Developmental Approach for Parents. J Genet Couns. 2018; 27(3):533-548. DOI: 10.1007/s10897-017-0191-7. View

13.

Kuchenbaecker K, Hopper J, Barnes D, Phillips K, Mooij T, Roos-Blom M . Risks of Breast, Ovarian, and Contralateral Breast Cancer for BRCA1 and BRCA2 Mutation Carriers. JAMA. 2017; 317(23):2402-2416. DOI: 10.1001/jama.2017.7112. View

14.

Quarrell O, Rigby A, Barron L, Crow Y, Dalton A, Dennis N . Reduced penetrance alleles for Huntington's disease: a multi-centre direct observational study. J Med Genet. 2007; 44(3):e68. PMC: 2598018. DOI: 10.1136/jmg.2006.045120. View

15.

Budych K, Helms T, Schultz C . How do patients with rare diseases experience the medical encounter? Exploring role behavior and its impact on patient-physician interaction. Health Policy. 2012; 105(2-3):154-64. DOI: 10.1016/j.healthpol.2012.02.018. View

16.

Weber E, Shuman C, Wasserman J, Barrera M, Patenaude A, Fung K . "A change in perspective": Exploring the experiences of adolescents with hereditary tumor predisposition. Pediatr Blood Cancer. 2018; 66(1):e27445. DOI: 10.1002/pbc.27445. View

17.

Dures E, Morris M, Gleeson K, Rumsey N . The psychosocial impact of epidermolysis bullosa. Qual Health Res. 2011; 21(6):771-82. DOI: 10.1177/1049732311400431. View

18.

Liede A, Cai M, Crouter T, Niepel D, Callaghan F, Evans D . Risk-reducing mastectomy rates in the US: a closer examination of the Angelina Jolie effect. Breast Cancer Res Treat. 2018; 171(2):435-442. PMC: 6096880. DOI: 10.1007/s10549-018-4824-9. View

19.

Wakefield C, Hanlon L, Tucker K, Patenaude A, Signorelli C, McLoone J . The psychological impact of genetic information on children: a systematic review. Genet Med. 2016; 18(8):755-62. DOI: 10.1038/gim.2015.181. View

20.

Forrest Keenan K, Miedzybrodzka Z, van Teijlingen E, McKee L, Simpson S . Young people's experiences of growing up in a family affected by Huntington's disease. Clin Genet. 2007; 71(2):120-9. DOI: 10.1111/j.1399-0004.2006.00702.x. View