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Chanita Hughes, C. Lerman, M. Schwartz, B. Peshkin, L. Wenzel, S. Narod, Camille Corio, K. Tercyak, D. Hanna, C. Isaacs, D. Main (2002)All in the family: evaluation of the process and content of sisters' communication about BRCA1 and BRCA2 genetic test results.
American journal of medical genetics, 107 2
K Aktan-Collan, A Haukkala, H Kääriäinen (2001)Life and health insurance behaviour of individuals having undergone a predictive genetic testing programme for hereditary non-polyposis colorectal cancer
Community Genet, 4
P. Lynch (2007)New Issues in Genetic Counseling of Hereditary Colon Cancer
Clinical Cancer Research, 13
Kirsi Pylvänäinen, M. Kairaluoma, J. Mecklin (2005)Compliance and Satisfaction with Long-Term Surveillance in Finnish HNPCC Families
Familial Cancer, 5
A. Tupasela (2006)When legal worlds collide: from research to treatment in hereditary cancer prevention.
European journal of cancer care, 15 3
P. Borry, G. Evers‐Kiebooms, M. Cornel, A. Clarke, K. Dierickx (2009)Genetic testing in asymptomatic minorsBackground considerations towards ESHG Recommendations
European Journal of Human Genetics, 17
Graeme Suthers, Jacqueline Armstrong, Joya McCormack, Debra Trott (2005)Letting the family know: balancing ethics and effectiveness when notifying relatives about genetic testing for a familial disorder
Journal of Medical Genetics, 43
K. Aktán-Collán, A. Haukkala, H. Kääriäinen (2002)Life and Health Insurance Behaviour of Individuals Having Undergone a Predictive Genetic Testing Programme for Hereditary Non-Polyposis Colorectal Cancer
Public Health Genomics, 4
K. Aktán-Collán, A. Haukkala, Kirsi Pylvänäinen, H. Järvinen, L. Aaltonen, P. Peltomäki, E. Rantanen, H. Kääriäinen, J. Mecklin (2007)Direct contact in inviting high-risk members of hereditary colon cancer families to genetic counselling and DNA testing
Journal of Medical Genetics, 44
D. Wertz, J. Fanos, P. Reilly (1994)Genetic testing for children and adolescents. Who decides?
JAMA, 272 11
Peter Beighton, Greta Beighton (1997)de la Chapelle, A.
PM Lynch (2007)New issues in genetic counselling and testing of hereditary colon cancer
Clin Cancer Res, 13
M. Aarnio, R. Sankila, E. Pukkala, R. Salovaara, L. Aaltonen, A. Chapelle, P. Peltomäki, J. Mecklin, H. Järvinen (1999)Cancer risk in mutation carriers of DNA‐mismatch‐repair genes
International Journal of Cancer, 81
E. Stoffel, Beth Ford, Rowena Mercado, Darashana Punglia, W. Kohlmann, P. Conrad, Amie Blanco, K. Shannon, Mark Powell, S. Gruber, J. Terdiman, D. Chung, S. Syngal (2008)Sharing genetic test results in Lynch syndrome: communication with close and distant relatives.
Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association, 6 3
C. Carlsson, M. Nilbert (2007)Living with Hereditary Non-polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing
Journal of Genetic Counseling, 16
H. Vasen, J. Wijnen, F. Menko, J. Kleibeuker, B. Taal, G. Griffioen, F. Nagengast, E. Meijers-Heijboer, L. Bertario, L. Varesco, M. Bisgaard, J. Mohr, R. Fodde, Khan Pm (1996)Cancer risk in families with hereditary nonpolyposis colorectal cancer diagnosed by mutation analysis.
Gastroenterology, 110 4
E. Claes, G. Evers‐Kiebooms, A. Boogaerts, M. Decruyenaere, L. Denayer, E. Legius (2003)Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients
American Journal of Medical Genetics Part A, 116A
C. Gaff, A. Clarke, P. Atkinson, S. Sivell, G. Elwyn, R. Iredale, H. Thornton, J. Dundon, C. Shaw, A. Edwards (2007)Process and outcome in communication of genetic information within families: a systematic review
European Journal of Human Genetics, 15
I. Mesters, M. Ausems, Sophie Eichhorn, H. Vasen (2004)Informing one’s family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a retrospective exploratory study
Familial Cancer, 4
A. Jong, Y. Hendriks, J. Kleibeuker, S. Boer, A. Cats, G. Griffioen, F. Nagengast, F. Nelis, M. Rookus, H. Vasen (2006)Decrease in mortality in Lynch syndrome families because of surveillance.
Gastroenterology, 130 3
Jordana Segal, M. Esplen, B. Toner, Sylvia Baedorf, S. Narod, K. Butler (2004)An investigation of the disclosure process and support needs of BRCA1 and BRCA2 carriers
American Journal of Medical Genetics Part A, 125A
R. Lebel (1995)Genetic testing for children and adolescents.
JAMA, 273 14
S. Peterson, B. Watts, L. Koehly, S. Vernon, W. Baile, W. Kohlmann, E. Gritz (2003)How families communicate about HNPCC genetic testing: Findings from a qualitative study
American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 119C
K Aktan-Collan, A Haukkala, JP Mecklin (2001)Comprehension of cancer risk one and 12 months after predictive genetic testing for hereditary non-polyposis colorectal cancer
J Med Genet, 38
H. Järvinen, L. Renkonen-Sinisalo, K. Aktán-Collán, P. Peltomäki, L. Aaltonen, J. Mecklin (2009)Ten years after mutation testing for Lynch syndrome: cancer incidence and outcome in mutation-positive and mutation-negative family members.
Journal of clinical oncology : official journal of the American Society of Clinical Oncology, 27 28
K. Landsbergen, C. Verhaak, F. Kraaimaat, N. Hoogerbrugge (2004)Genetic uptake in BRCA-mutation families is related to emotional and behavioral communication characteristics of index patients
Familial Cancer, 4
R. Pentz, S. Peterson, B. Watts, S. Vernon, P. Lynch, L. Koehly, E. Gritz (2005)Hereditary nonpolyposis colorectal cancer family members' perceptions about the duty to inform and health professionals' role in disseminating genetic information.
Genetic testing, 9 3
H. Lynch, C. Snyder, J. Lynch, S. Ghate, S. Narod, Gordon Gong (2009)Family Information Service Participation Increases the Rates of Mutation Testing Among Members of Families with BRCA1/2 Mutations
The Breast Journal, 15
C. Gaff, V. Collins, Tiffany Symes, J. Halliday (2005)Facilitating Family Communication About Predictive Genetic Testing: Probands’ Perceptions
Journal of Genetic Counseling, 14
Mette Svendsen, L. Koch (2006)Genetics and prevention: a policy in the making
New Genetics and Society, 25
T. Demarco, W. Mckinnon (2006)Life after BRCA1/2 testing: family communication and support issues.
Breast disease, 27
A. Metcalfe, J. Coad, G. Plumridge, P. Gill, P. Farndon (2008)Family communication between children and their parents about inherited genetic conditions: a meta-synthesis of the research
European Journal of Human Genetics, 16
K. Aktán-Collán, J. Mecklin, H. Järvinen, M. Nyström-Lahti, P. Peltomäki, Ismo Söderling, A. Uutela, A. Chapelle, H. Kääriäinen (2000)Predictive genetic testing for hereditary non‐polyposis colorectal cancer: Uptake and long‐term satisfaction
International Journal of Cancer, 89
H. Vasen, G. Moslein, Á. Alonso, Stefan Aretz, Inge Bernstein, L. Bertario, Ignacio Blanco, S. Bülow, John Burn, G. Capella, C. Colas, Christoph Engel, I. Frayling, N. Rahner, F. Hes, S. Hodgson, Mecklin Jp, Pål Møller, T. Myrhøj, F. Nagengast, Y. Parc, M. León, L. Renkonen-Sinisalo, J. Sampson, A. Stormorken, S. Tejpar, Huw Thomas, J. Wijnen, J. Lubiński, Heikki Järvinen, E. Claes, K. Heinimann, J. Karagiannis, A. Lindblom, I. Dove‐Edwin, H. Müller (2010)Recommendations to improve identification of hereditary and familial colorectal cancer in Europe
Familial Cancer, 9
H. Lynch, A. Chapelle (2003)Hereditary colorectal cancer.
The New England journal of medicine, 348 10
Kim Seymour, J. Addington-hall, A. Lucassen, C. Foster (2010)What Facilitates or Impedes Family Communication Following Genetic Testing for Cancer Risk? A Systematic Review and Meta-Synthesis of Primary Qualitative Research
Journal of Genetic Counseling, 19
L. Koehly, S. Peterson, B. Watts, Kari Kempf, S. Vernon, E. Gritz (2003)A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning.
Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology, 12 4
Identification of hereditary predisposition to cancer has limited significance if not followed by efficient cancer prevention. The responsibility of informing offspring about genetic risk often falls to the parents. We systematically investigated how parents with Lynch Syndrome share knowledge of genetic risk with their offspring, challenges in the communication process and wish for professional support. Of all known mutation carriers over age 40 (n = 337) in 102 Finnish Lynch Syndrome families, 86% completed a self-reported questionnaire; 248 of them (86%) had children. Of the 248 parents, 87% reported disclosure and 13% nondisclosure. Reasons for nondisclosure were mainly the young age of offspring, socially distant relationships, or feeling of difficulty in discussing the topic. Men reported significantly more often disclosure with a support person (spouse etc.) (P < 0.001). The most difficult communication aspect was discussing children’s cancer risk. Of the 191 firstborn adult children informed, 69% had taken the predictive genetic test. Every third parent suggested that health professionals should be involved in passing on the information and that a family appointment at the genetic clinic should be organized at the time of disclosure. Nearly all parents had informed their adult offspring about the genetic risk and possibility of genetic testing, but almost one-third were unsure of how their offspring had used the information. The challenge is to improve the communication processes, so that all offspring would get the information important for their health care, and parents would get the professional support desired at disclosure.
Familial Cancer – Springer Journals
Published: Sep 21, 2010
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