Familial Cancer

, Volume 18, Issue 1, pp 43–51 | Cite as

Unsolicited information letters to increase awareness of Lynch syndrome and familial colorectal cancer: reactions and attitudes

  • Helle Vendel PetersenEmail author
  • Birgitte Lidegaard Frederiksen
  • Charlotte Kvist Lautrup
  • Lars Joachim Lindberg
  • Steen Ladelund
  • Mef Nilbert
Original Article


Dissemination of information on a genetically increased risk should according to guidelines primarily be family-mediated. Incomplete and incorrect information spread has, however, been documented and implies missed possibilities for prevention. In Denmark, the national HNPCC register has been granted an exception to send unsolicited letters with information on hereditary colorectal cancer and an invitation to genetic counseling to members of families with familial and hereditary colorectal cancer. To evaluate this approach, we investigated reactions and attitudes to unsolicited letters in 708 members of families with genetic predisposition and in 1600 individuals from the general population. Support for information letters was expressed by 78% of the family members and by 82% of the general population. Regarding route of information, 90% of family members preferred a letter to no information, 66% preferred information from the hospital rather than from family members and 40% preferred to obtain information from a close family member. Our results suggest that use of unsolicited information letters from the health care system may be a feasible and highly acceptable strategy to disseminate information to families at high risk of colorectal cancer.


Hereditary colorectal cancer Dissemination of genetic information Direct approach Attitudes towards unsolicited risk information Reactions to risk information 


  1. 1.
    Win AK, Jenkins MA, Dowty JG et al (2017) Prevalence and penetrance of major genes and polygenes for colorectal cancer. Cancer Epidemiol Biomark Prev 26:404–412. CrossRefGoogle Scholar
  2. 2.
    Patel SG, Ahnen DJ (2012) Familial colon cancer syndromes: an update of a rapidly evolving field. Curr Gastroenterol Rep 14:428–438. CrossRefGoogle Scholar
  3. 3.
    Lynch HT, Lanspa S, Shaw T et al (2017) Phenotypic and genotypic heterogeneity of Lynch syndrome: a complex diagnostic challenge. Fam Cancer. Google Scholar
  4. 4.
    Vasen HFA, Blanco I, Aktan-Collan K et al (2013) Revised guidelines for the clinical management of Lynch syndrome (HNPCC): recommendations by a group of European experts. Gut 62:812–823. CrossRefGoogle Scholar
  5. 5.
    Forrest LE, Delatycki MB, Skene L, Aitken M (2007) Communicating genetic information in families: a review of guidelines and position papers. Eur J Hum Genet 15:612–618. CrossRefGoogle Scholar
  6. 6.
    Gaff CL, Clarke AJ, Atkinson P et al (2007) Process and outcome in communication of genetic information within families: a systematic review. Eur J Hum Genet 15:999–1011. CrossRefGoogle Scholar
  7. 7.
    Hampel H (2016) Genetic counseling and cascade genetic testing in Lynch syndrome. Fam Cancer 15:423–427. CrossRefGoogle Scholar
  8. 8.
    Bleiker EM, Esplen MJ, Meiser B et al (2013) 100 years lynch syndrome: what have we learned about psychosocial issues? Fam Cancer 12:325–339CrossRefGoogle Scholar
  9. 9.
    Vos J, Menko F, Jansen AM et al (2011) A whisper-game perspective on the family communication of DNA-test results: a retrospective study on the communication process of BRCA1/2-test results between proband and relatives. Fam Cancer 10:87–96. CrossRefGoogle Scholar
  10. 10.
    Offit K, Groeger E, Turner S et al (2004) The “duty to warn” a patient’s family members about hereditary disease risks. JAMA 292:1469–1473. CrossRefGoogle Scholar
  11. 11.
    Weaver M (2016) The double helix: applying an ethic of care to the duty to warn genetic relatives of genetic information. Bioethics 30:181–187. CrossRefGoogle Scholar
  12. 12.
    Dheensa S, Fenwick A, Shkedi-Rafid S et al (2016) Health-care professionals’ responsibility to patients’ relatives in genetic medicine: a systematic review and synthesis of empirical research. Genet Med 18:290–301. CrossRefGoogle Scholar
  13. 13.
    Aktan-Collan K, Haukkala A, Pylvanainen K et al (2007) Direct contact in inviting high-risk members of hereditary colon cancer families to genetic counselling and DNA testing. J Med Genet 44:732–738CrossRefGoogle Scholar
  14. 14.
    Suthers GK, Armstrong J, McCormack J, Trott D (2006) Letting the family know: balancing ethics and effectiveness when notifying relatives about genetic testing for a familial disorder. J Med Genet 43:665–670. CrossRefGoogle Scholar
  15. 15.
    Hadfield SG, Humphries SE (2005) Implementation of cascade testing for the detection of familial hypercholesterolaemia. Curr Opin Lipidol 16:428–433CrossRefGoogle Scholar
  16. 16.
    Nejadtaghi M, Jafari H, Farrokhi E, Samani KG (2017) Familial colorectal cancer type X (FCCTX) and the correlation with various genes: a systematic review. Curr Probl Cancer. Google Scholar
  17. 17.
    Nilbert M, Wikman FP, Hansen TVO et al (2009) Major contribution from recurrent alterations and MSH6 mutations in the Danish Lynch syndrome population. Fam Cancer 8:75–83. CrossRefGoogle Scholar
  18. 18.
    Vasen HF, Watson P, Mecklin JP, Lynch HT (1999) New clinical criteria for hereditary nonpolyposis colorectal cancer (HNPCC, Lynch syndrome) proposed by the International Collaborative group on HNPCC. Gastroenterology 116:1453–1456CrossRefGoogle Scholar
  19. 19.
    Zetner DB, Bisgaard ML (2017) Familial colorectal cancer type X. Curr Genom 18:341–359. CrossRefGoogle Scholar
  20. 20.
    Pedersen CB (2011) The Danish civil registration system. Scand J Public Health 39:22–25. CrossRefGoogle Scholar
  21. 21.
    Graneheim UH, Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 24:105–112. CrossRefGoogle Scholar
  22. 22.
    Chivers Seymour K, Addington-Hall J, Lucassen AM, Foster CL (2010) What facilitates or impedes family communication following genetic testing for cancer risk? A systematic review and meta-synthesis of primary qualitative research. J Genet Couns 19:330–342. CrossRefGoogle Scholar
  23. 23.
    Vos J, Jansen AM, Menko F et al (2011) Family communication matters: the impact of telling relatives about unclassified variants and uninformative DNA-test results. Genet Med 13:333–341. CrossRefGoogle Scholar
  24. 24.
    Daly MB (2015) A family-centered model for sharing genetic risk. J Law Med Ethics 43:545–551. Google Scholar
  25. 25.
    Bradbury AR, Dignam JJ, Ibe CN et al (2007) How often do BRCA mutation carriers tell their young children of the family’s risk for cancer? A study of parental disclosure of BRCA mutations to minors and young adults. J Clin Oncol 25:3705–3711. CrossRefGoogle Scholar
  26. 26.
    Petersen HV, Nilbert M, Bernstein I, Carlsson C (2014) Balancing life with an increased risk of cancer: lived experiences in healthy individuals with Lynch syndrome. J Genet Couns 23:778–784CrossRefGoogle Scholar
  27. 27.
    Mendes Á, Paneque M, Sousa L et al (2016) How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence. Eur J Hum Genet 24:315–325. CrossRefGoogle Scholar
  28. 28.
    Kohut K, Manno M, Gallinger S, Esplen MJ (2007) Should healthcare providers have a duty to warn family members of individuals with an HNPCC-causing mutation? A survey of patients from the Ontario Familial Colon Cancer Registry. J Med Genet 44:404–407. CrossRefGoogle Scholar
  29. 29.
    Rothstein MA (2018) Reconsidering the duty to warn genetically at-risk relatives. Genet Med. Google Scholar
  30. 30.
    Wolff K, Brun W, Kvale G et al (2010) How to handle genetic information: a comparison of attitudes among patients and the general population. Public Health Genom 13:396–405. CrossRefGoogle Scholar
  31. 31.
    Wolff K, Brun W, Kvale G, Nordin K (2007) Confidentiality versus duty to inform: an empirical study on attitudes towards the handling of genetic information. Am J Med Genet A 143:142–148CrossRefGoogle Scholar
  32. 32.
    Meiser B (2005) Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psychooncology 14:1060–1074CrossRefGoogle Scholar
  33. 33.
    Seppälä TT, Pylvänäinen K, Mecklin J-P (2017) Uptake of genetic testing by the children of Lynch syndrome variant carriers across three generations. Eur J Hum Genet 25:1237–1245. CrossRefGoogle Scholar
  34. 34.
    Wiseman M, Dancyger C, Michie S (2010) Communicating genetic risk information within families: a review. Fam Cancer 9:691–703. CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media B.V., part of Springer Nature 2018

Authors and Affiliations

  1. 1.The Danish HNPCC Register, Clinical Research CenterCopenhagen University Hospital, HvidovreHvidovreDenmark
  2. 2.Department of Clinical GeneticsAalborg University HospitalAalborgDenmark
  3. 3.The Danish Cancer Society Research CenterCopenhagenDenmark

Personalised recommendations