Clin Genet 2012: 81: 421 – 429 Printed in Singapore. All rights reserved 2011 John Wiley & Sons A/S CLINICAL GENETICS doi: 10.1111/j.1399-0004.2011.01811.x Social and Behavioural Research in Clinical Genetics Section Editor: Aad Tibben, email: a.tibben@lumc.nl The introduction of a choice to learn pre-symptomatic DNA test results for BRCA or Lynch syndrome either face-to-face or by letter Voorwinden JS, Jaspers JPC, ter Beest JG, Kievit Y, Sijmons RH, Oosterwijk JC. The introduction of a choice to learn pre-symptomatic DNA test results for BRCA or Lynch syndrome either face-to-face or by letter. Clin Genet 2012: 81: 421–429. John Wiley & Sons A/S, 2011 In predictive DNA testing for hereditary cancer, test results should traditionally be disclosed face-to-face. Increasingly, however, counselees ask to receive their test result at home by letter. To compare the quality of genetic counselling in the traditional way to a procedure in which counselees are offered a choice on how to get their test result. Counselees from families with a known BRCA1/2 or Lynch syndrome mutation were randomised into two groups. The control group was given the DNA test result in a face-to-face consultation. In the intervention group people could choose to learn their test result face-to-face or by letter. The quality of genetic counselling was assessed through questionnaires at three different moments. Data of 198 counselees were analysed. The quality of genetic counselling and psychological functioning were equally good in both groups. The majority of cases chose for disclosure by letter. The counselees with a good test result in the intervention group were the most satisfied. Our results indicate that in predictive DNA testing for BRCA1/2 and Lynch syndrome, a choice protocol is equally safe and more satisfying. Moreover, it is more efficient for both counsellor and counselee. Conflict of interest The authors declare no conflict of interest. JS Voorwinden a , JPC Jaspers a , JG ter Beest b , Y Kievit a , RH Sijmons b and JC Oosterwijk b a Department of Medical Psychology, and b Department of Genetics, University of Groningen and University Medical Center Groningen Key words: BRCA – genetic counselling – lynch syndrome – patient satisfaction – predictive testing – result disclosure Corresponding author: JS Voorwinden, Psychosocial Guidance Service, AB 16, University Medical Center Groningen, 9700 RB Groningen, The Netherlands. Tel.: +31 50 361 38 85; fax: +31 50 361 14 79; e-mail: j.s.voorwinden@umcg.nl [PO BOX 30.001] Received 4 August 2011, revised and accepted for publication 14 November 2011 Presymptomatic DNA testing is embedded in genetic counselling and is usually offered by clinical genetics departments in university hospitals. On the basis of the Huntington’s disease protocol, this type of DNA test- ing in the Netherlands traditionally requires at least two counselling sessions, including face-to-face disclosure of the test results (1). However, there is an increas- ing demand from our patients for more freedom of choice within the procedure. Specifically, a substantial group of patients wants to learn their DNA result by letter, followed by an optional extensive counselling session if a mutation is found. They argue that they would prefer to deal with the first emotions after dis- closure of the DNA result in a private setting and have a counselling appointment several days later. They also indicate that having to travel long distances and take time off work was unnecessary if the result was favourable. 421