‘It's their blood not mine’: Who's responsible for (not) telling relatives about genetic risk?
- 1 September 2005
- journal article
- research article
- Published by Informa UK Limited in Health, Risk & Society
- Vol. 7 (3), 209-226
- https://doi.org/10.1080/13698570500229606
Abstract
With advances in the ‘new genetics’, an increasing number of people will have access to genetic information and predictive or susceptibility testing. Genetic knowledge has implications for individuals themselves, as well as other family members. In general, health professionals encourage people to pass on genetic risk information to their relatives. However, the disclosure of such information is not always straightforward and, consequently, some people may not be aware of their risk. If risk information is actively withheld, genetic counsellors may need to determine whether they have a duty to pass this on, particularly when preventive action can be taken. To date, little research has explored the barriers and facilitators in family communication about genetic risk. This paper draws on empirical data from a qualitative study exploring communication in families with late-onset familial disease. Interviews were conducted with participants who received genetic counselling for risk of Huntington's disease and hereditary breast or ovarian cancer. Participants' experiences of who was responsible for (not) telling relatives in their families is studied. A number of themes were identified. These were: (1) ‘whose place is it to tell’, (2) the gendering of disclosure, and (3) who is ‘family’. The implications of these findings are considered.Keywords
This publication has 34 references indexed in Scilit:
- CULTURAL DIFFERENCES IN FAMILY COMMUNICATION ABOUT DUCHENNE MUSCULAR DYSTROPHYDevelopmental Medicine and Child Neurology, 2008
- To tell or not to tell: barriers and facilitators in family communication about genetic riskClinical Genetics, 2003
- Communication of BRCA1 and BRCA2 results to at‐risk relatives: A cancer risk assessment program's experienceAmerican Journal Of Medical Genetics Part C-Seminars In Medical Genetics, 2003
- Communication about carrier testing within hemophilia A familiesAmerican Journal Of Medical Genetics Part C-Seminars In Medical Genetics, 2003
- Breast cancer survivors' attitudes about communication of breast cancer risk to their childrenAmerican Journal Of Medical Genetics Part C-Seminars In Medical Genetics, 2003
- Effect of family history on disclosure patterns of cystic fibrosis carrier statusAmerican Journal Of Medical Genetics Part C-Seminars In Medical Genetics, 2002
- Voluntary Disclosure of BRCA1 Mutation Test ResultsGenetic Testing, 2002
- Disclosure of Huntington's Disease to Family Members: The Dilemma of Known but Unknowing PartiesGenetic Testing, 2000
- Barriers to carrier testing for adult cystic fibrosis sibs: The importance of not knowingAmerican Journal of Medical Genetics, 1995
- Reproductive decision making of aunts and uncles of a child with cystic fibrosis: Genetic risk perception and attitudes toward carrier identification and prenatal diagnosisAmerican Journal of Medical Genetics, 1992