Dissemination of Genetic Information in Swiss Families with Lynch Syndrome: A Qualitative Exploratory Study

Author Info

Eléonore Simond Emeline Davoine Maria C. Katapodi Sheila Unger

Corresponding Author

Sheila Unger
Division of Genetic Medicine, Centre Hospitalier Universitaire Vaudois, Lausanne, Switzerland

A B S T R A C T

In Switzerland, out of respect for privacy and in accordance with federal laws regarding genetic testing, information sharing about hereditary cancer predisposition syndromes is initiated solely by the proband and never from the medical clinic. Thus, an essentially medical task, communication of cancer risk and possible testing, is always delegated, at least initially, to the patient. In order to explore this communication process, its associated difficulties and possibilities for improvements, we have conducted a study with Lynch syndrome families in Western Switzerland. Semi-structured interviews were conducted with 19 participants (12 female, 7 male), either in person or by telephone. We specifically explored whether participants considered transmission of genetic information a medical or personal responsibility. Other recurrent themes were also identified, including family wisdom and superstitions, emotional responses, and parent-child guilt. The identification of a cancer predisposition and the request to communicate this with family members remained a traumatic experience for many. However, within this group, which may be biased towards better communicators, the information was shared with at risk relatives. Despite inherent difficulties, the majority wish to retain the responsibility for contacting family members. This suggests that in Switzerland, and possibly in other countries with similar rules/attitudes towards privacy, efforts to improve cascade screening should be directed towards facilitating intra-familial communication.

Article Info

Article Type

Research Article

Publication history

Received: Mon 23, Dec 2019
Accepted: Mon 06, Jan 2020
Published: Wed 15, Jan 2020

Copyright

© 2023 Sheila Unger. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Hosting by Science Repository.
DOI: 10.31487/j.COR.2020.01.01