A comparison of Australian and French families affected by sarcoma: perceptions of genetics and incidental findings

Author:

Rasmussen Victoria1,Forrest Laura E12,Rogasik Muriel34,Girodet Magali35,Meeus Pierre3,Sunyach Marie-Pierre3,Blay Jean-Yves34,Bally Olivia3,Brahmi Mehdi3,Ballinger Mandy L6,Niedermayr Eveline1,Thomas David M6,Halliday Jane7,James Paul12,Ray-Coquard Isabelle35,Young Mary-Anne16,

Affiliation:

1. Parkville Familial Cancer Centre, Peter MacCallum Cancer Centre, Melbourne, Australia

2. Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne, Australia

3. Centre Léon Bérard, University Lyon 1, Lyon, France

4. EURACAN (European network for Rare adult solid Cancer), Centre Léon Bérard, University Lyon 1, Lyon, France

5. HESPER (Health Services and Performance Research) Lab EA 4128, University Lyon 1, Lyon, France

6. The Kinghorn Cancer Centre, Garvan Institute of Medical Research, Sydney, Australia

7. Public Health Genetics, Murdoch Children's Research Institute, Melbourne, Australia

Abstract

Aim: To compare Australian and French perceptions of genetics and preferences regarding the return of incidental findings. Methods: Participants from the International Sarcoma Kindred Study received a survey at intake to cancer referral units. A total of 1442 Australian and 479 French individuals affected by sarcoma and their unaffected family members responded to four hypothetical scenarios depicting hereditary conditions of varying treatability and severity. Results: Australians’ preference for the return of incidental findings was consistently higher than French for all scenarios. Country group differences were significant for two scenarios when individual characteristics were controlled through multivariable analyses. Conclusion: Findings support the need for guidelines that are sensitive to sociocultural context and promote autonomous decision-making.

Publisher

Future Medicine Ltd

Subject

Pharmacology,Molecular Medicine,General Medicine

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