Impact of a cancer registry-based genealogy service to support clinical genetics services

David H. Brewster*, Alison Fordyce, Roger J. Black, Scottish Clinical Geneticists

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

10 Citations (Scopus)


In collaboration with the network of genetics clinics in Scotland, a brief questionnaire was designed to gather data prospectively about the impact of information arising from pedigree research provided by Scottish Cancer Registry personnel. Pedigree research in Scotland is facilitated by access to public records of births, deaths, marriages, and historic census returns up to 1901, and enables the construction of accurate and extensive family pedigrees encompassing generations beyond the detailed knowledge of the proband. Subject to existing confidentiality guidelines, linkage of these pedigrees to cancer registration records results in a more comprehensive family history including the age at diagnosis of any cancer, multiple primary cancers, and cancers unreported from death certificates. Of 454 requests for pedigree research completed between 1 April 2002 and 31 March 2003, questionnaires were returned for 425 (94%). The information fed back to genetics clinics led to changes in family history, risk categorisation, and management in 41%, 30%, and 23% of cases, respectively. Management advice altered in both directions, that is, to institute active follow-up and surveillance of clinic attendees and their relatives where none was previously envisaged, and viceversa. The interests of current and future generations of patients concerned about their familial risk of cancer will be served by measures which enable cancer registries to collect data that are as accurate and complete as possible.

Original languageEnglish
Pages (from-to)139-141
Number of pages3
JournalFamilial Cancer
Issue number2
Publication statusPublished - 1 Dec 2004


  • Cancer registration
  • Clinical genetics
  • Genealogy
  • Genetic counselling
  • Pedigree research


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