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ISD Scotland better information, better decisions, better health

Genetics Genealogy

Cancer

NHS National Services Scotland ISD Scotland & NHS National Services Scotland

Genetics Genealogy

The Genetics Genealogy Team provides a unique service researching Statutory Birth, Marriage and Death certificates through the National Records of Scotland to build a family history. We use this family tree, along with cancer registry information, to validate a family history of a patient who has been referred to clinical geneticists with a possible risk of an inherited genetic condition. By supplying accurate, informative and comprehensive information geneticists can use this information to complete a risk assessment for the patient. Risk assessment may result in gene testing, prophylactic surgery, screening appropriate to the determined risk or reassurance and discharge from the care of clinical genetics services. For the NHS, determining more accurate genetic risk and managing it appropriately, means limited and expensive resources are used in the most effective manner.

Information Requests (Genetic Clinics only)

When cancer information is required for specific relatives then an information request should be sent in via our dedicated genetics database, post or email (please note that you must have a nhs.net or nhs.uk email address). The following information is advantageous for the search and the more information supplied the higher chance a match will be found. If the individual is still alive, written consent is mandatory. We do not have access to out of Scotland registry information or Statutory records so we can only research individual's who have had treatment or died in Scotland.

  • Forename(s)
  • Surname(s)
  • Maiden Name (if applicable)
  • Date of birth
  • Date of death (if applicable)
  • Address
  • Diagnosis
  • Date of diagnosis

Pedigree Research (Scottish clinics only)

The most unique part of the Genetic Service offered is the genealogical research of family pedigrees using the Scottish Statutory Records which began in 1855 and the subsequent matching of deaths post 1958 to Scottish Cancer Registration data. This provides an extremely informative picture of inherited disease over several generations often beyond the knowledge of the family informant. These researched families allow Geneticists to make more confident decisions on potential family risk. We can only research Scottish family records and this service is for Scottish clinics only.

The journal, Familial Cancer, featured this article Impact of a cancer registry-based genealogy service to support clinical genetics servicesDownload PDF file [64Kb] on our Pedigree research.

Annual Report

ISD Scottish Genetics Genealogy Service: Annual Report 2016 Download PDF file [53Kb]

Contact

Genetics Genealogy Service
NHS National Services Scotland
Area 151A, First Floor
Gyle Square, 1 South Gyle Crescent
Edinburgh
EH12 9EB

Email: NSS.geneticsgenealogy@nhs.net
Tel: 0131 275 6453; 6277

© ISD Scotland 2010
Information Services Division,
NHS National Services Scotland,
Gyle Square,
1 South Gyle Crescent,
Edinburgh EH12 9EB,
Tel: 0131 275 7050
NSS.isdSHIS@nhs.net  
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Working at the very heart of the health service, NSS delivers services critical to frontline patient care and in support of the efficient and effective operation of NHS Scotland. Visit the NSS Website for more information