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Advocate's Viewpoint on Hereditary Breast/Ovarian Cancer

This paper discusses the presentation I held at the symposium on genetics during the 4(th )European Breast Cancer Conference held in Hamburg in March 2004. Primarily, the goals and working methods of the advocacy group specialised in Hereditary Breast/Ovarian Cancer of the Dutch Breast Cancer Patien...

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Autor principal: Kolling-Dandrieu, Francisca Bach
Formato: Texto
Lenguaje:English
Publicado: BioMed Central 2004
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2840008/
https://www.ncbi.nlm.nih.gov/pubmed/20233464
http://dx.doi.org/10.1186/1897-4287-2-4-199
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author Kolling-Dandrieu, Francisca Bach
author_facet Kolling-Dandrieu, Francisca Bach
author_sort Kolling-Dandrieu, Francisca Bach
collection PubMed
description This paper discusses the presentation I held at the symposium on genetics during the 4(th )European Breast Cancer Conference held in Hamburg in March 2004. Primarily, the goals and working methods of the advocacy group specialised in Hereditary Breast/Ovarian Cancer of the Dutch Breast Cancer Patient Organisation known as BorstkankerVereniging Nederland (BVN) are explained. Furthermore, some specific individual problems that mutation carriers might encounter before and after BRCA1/2 susceptibility testing are discussed. These include: dilemmas in choosing preventive interventions, dealing with the psychological impact of knowing you are a mutation carrier, dealing with the social implications of being genetically at risk, an example of insurance discrimination. In addition, some controversial social and ethical issues that are currently under debate are highlighted, such as the issue of the European patenting of the breast cancer susceptibility genes BRCA1 and BRCA2. Since this topic could also become relevant for other gene-related diseases, society as a whole has to consider the ethical and social implications related to the patenting of human genes in general. Another ethical area of debate is the controversial issue of prenatal BRCA testing and the choice of pregnancy termination. Finally, the Working Party pleads for the international co-operation and exchange of data and experience among professionals as well as patients. It appears that professionals in different European countries tend to advise on different risk management strategies and treatments and as such, the Working Party strongly advocates the international standardisation of risk management and treatment of mutation carriers. In this respect, specific attention should be given to a group that has had a non-informative or negative BRCA test result, because this group is still considered to be at high risk to develop the disease.
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spelling pubmed-28400082010-03-17 Advocate's Viewpoint on Hereditary Breast/Ovarian Cancer Kolling-Dandrieu, Francisca Bach Hered Cancer Clin Pract Research This paper discusses the presentation I held at the symposium on genetics during the 4(th )European Breast Cancer Conference held in Hamburg in March 2004. Primarily, the goals and working methods of the advocacy group specialised in Hereditary Breast/Ovarian Cancer of the Dutch Breast Cancer Patient Organisation known as BorstkankerVereniging Nederland (BVN) are explained. Furthermore, some specific individual problems that mutation carriers might encounter before and after BRCA1/2 susceptibility testing are discussed. These include: dilemmas in choosing preventive interventions, dealing with the psychological impact of knowing you are a mutation carrier, dealing with the social implications of being genetically at risk, an example of insurance discrimination. In addition, some controversial social and ethical issues that are currently under debate are highlighted, such as the issue of the European patenting of the breast cancer susceptibility genes BRCA1 and BRCA2. Since this topic could also become relevant for other gene-related diseases, society as a whole has to consider the ethical and social implications related to the patenting of human genes in general. Another ethical area of debate is the controversial issue of prenatal BRCA testing and the choice of pregnancy termination. Finally, the Working Party pleads for the international co-operation and exchange of data and experience among professionals as well as patients. It appears that professionals in different European countries tend to advise on different risk management strategies and treatments and as such, the Working Party strongly advocates the international standardisation of risk management and treatment of mutation carriers. In this respect, specific attention should be given to a group that has had a non-informative or negative BRCA test result, because this group is still considered to be at high risk to develop the disease. BioMed Central 2004-08-15 /pmc/articles/PMC2840008/ /pubmed/20233464 http://dx.doi.org/10.1186/1897-4287-2-4-199 Text en
spellingShingle Research
Kolling-Dandrieu, Francisca Bach
Advocate's Viewpoint on Hereditary Breast/Ovarian Cancer
title Advocate's Viewpoint on Hereditary Breast/Ovarian Cancer
title_full Advocate's Viewpoint on Hereditary Breast/Ovarian Cancer
title_fullStr Advocate's Viewpoint on Hereditary Breast/Ovarian Cancer
title_full_unstemmed Advocate's Viewpoint on Hereditary Breast/Ovarian Cancer
title_short Advocate's Viewpoint on Hereditary Breast/Ovarian Cancer
title_sort advocate's viewpoint on hereditary breast/ovarian cancer
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2840008/
https://www.ncbi.nlm.nih.gov/pubmed/20233464
http://dx.doi.org/10.1186/1897-4287-2-4-199
work_keys_str_mv AT kollingdandrieufranciscabach advocatesviewpointonhereditarybreastovariancancer