Pedrazzani, Carla Ambrogina and Caiata Zufferey, Maria and Kaiser-Grolimund, A and Aceti, M and Katapodi, M (2021) Communication of genetic risk within family members in hereditary cancers: challenges and role of health-care providers in supporting family communication. In: Social Justice in Times of Uncertainty. Conference of the Swiss sociological association, 28-30.6.2021, Genève, Switzerland. (In Press)
Full text not available from this repository.Abstract
In hereditary cancers, disclosure of genetic testing and communication of genetic information to family members is crucial to enable genetic risk assessment and counselling for cancer prevention and control. In Switzerland, according to privacy law, genetic information can be passed on to at-risk relatives only through the individual identified with the pathogenic variant. However, less than 50% of at-risk family members use cancer genetic services and 20-40% remain unaware of relevant genetic information. Healthcare providers have a relevant and challenging role in supporting family communication on genetics but this is still limited and not clear. Indeed, supporting communication of genetic information within family members may be challenging since it can lead professionals to deal with an ethical and professional dilemma about respect for patient’s autonomy and the right of family members to information. Additionally, no common recommended approach and no clear guidance is currently given about how addressing and encouraging family communication. The aim of this study is thus to understand how healthcare-providers address family-communication in clinical practice and how this may affect genetic test results disclosure from mutation carriers to relatives. To meet the study’s purpose a convergent-parallel mixed-method study is being conducted. Quantitative data are collected with self-administered surveys from hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (LS) mutation carriers and at-risk relatives from three linguistic areas of Switzerland. Concomitantly, qualitative data are collected with focus groups and interviews with mutation carriers, relatives and healthcare-providers. After quantitative and qualitative data analyses, data integration and interpretation will be done. Currently, 419 individuals have been recruited, 328 surveys completed and 11 focus groups and 25 interviews conducted (N=53). Less than 40% of participants remember receiving recommendation for genetic testing for at-risk relatives and about 65% shared genetic information to blood relatives. Qualitative data show that family communication on genetics is highly complex, selective, influenced by many individual and family-related aspects and changing along the trajectory of life and illness. It seems to be subject to certain logics (e.g. “protection”), which can lessen the moral responsibility to communicate (i.e. the fear of hurting or making people feel guilty). In case of illness, the weight given to family communication seems to be relative due to other concerns and priorities related to own health or to that of closest family members (i.e. the management of one's own illness/risk and that of close family members). According to mutation carriers’ perceptions, providers address communication to at-risk relatives discontinuously and in a quick and non-detailed way. Supporting communication of genetic information among biological relatives is a relevant and challenging aspect of genetic healthcare and risk communication. Moreover, research about genetic communication is timely and essential to implement interventions to enhance clinical practice, cascade testing and multilevel public-health initiatives for cancer prevention and control.
| Item Type: | Article in conference proceedings or Presentation at a conference (Speech) |
|---|---|
| Subjects: | Social studies |
| Department/unit: | Dipartimento economia aziendale, sanità e sociale > Centro competenze pratiche e politiche sanitarie |
| Depositing User: | Maria Caiata Zufferey |
| Date Deposited: | 23 Jun 2021 06:19 |
| Last Modified: | 17 Oct 2023 10:00 |
| URI: | http://repository.supsi.ch/id/eprint/12604 |
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