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'

Kelsey Stuttgen 1 2, Allison McCague 1 2, Juli Bollinger 1, Rachel Dvoskin 1, Debra Mathews 1

Affiliations

PMID: 32700788
DOI: 10.1002/jgc4.1314

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.

Keywords: Huntington's disease; adolescents; communication; ethics; family communication; hereditary cancer; parents; pediatrics.

References

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