Eléonore Simond,Emeline Davoine,Maria C. Katapodi ,Sheila Unger,
Dissemination of Genetic Information in Swiss Families with Lynch Syndrome: A Qualitative Exploratory Study
Clinical Oncology and Research
2020
2613-4942
http://dx.doi.org/10.31487/j.COR.2020.01.01
https://www.sciencerepository.org/dissemination-of-genetic-information-in-swiss-families-with-lynch-syndrome_COR-2020-1-101 
Abstract: 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.
Keywords: Lynch syndrome, intra-familial communication cascade screening communication barriers