1. ¹Department of Public Health, University of Oxford, Headington, Oxford, UK
2. ²NHS National Genetics Education and Development Centre, Norton Court, Birmingham Women's Hospital, Edgbaston, Birmingham, UK
3. ³Department of Primary Care, University of Oxford, Headington, Oxford, UK
4. ⁴Institute of Education, University of London, London, UK
5. ⁵Department of Public Health, The Ethox Centre, University of Oxford, Oxford, UK
6. ⁶Centre for Epidemiology and Biostatistics, Institute of Child Health, London, UK
7. ⁷Great Ormond Street Hospital, London, UK
8. ⁸Genetic Interest Group, Unit 4D, London, UK

Correspondence: Dr S Shepperd, Department of Public Health, University of Oxford, Old Road, Headington, Oxford OX3 7LF, UK. Tel: +44 (0) 1865 227037; Fax: +44 (0) 1865 226720; E-mail: sasha.shepperd@dphpc.ox.ac.uk

Received 20 January 2006; Revised 13 June 2006; Accepted 15 June 2006; Published online 26 July 2006.

Abstract

Information currently available to the public is inadequate to support those deciding to consent to a genetic test. As genetic knowledge continues to evolve, more people will be forced to consider the complex issues raised by genetic testing. We developed and tested criteria to guide the production and appraisal of information resources produced for the public on genetic testing. Lay people with and without experience of a genetic condition, and providers and producers of health information appraised and listed the criteria they used to rate the quality of a sample of information on cystic fibrosis, Down's syndrome, familial breast cancer, familial colon cancer, haemochromatosis, Huntington's disease, sickle cell disease, and thalassaemia. These genetic conditions represent different populations, disease pathways, and treatment decisions. The information medium could be written, electronic, CD, audio or video. The quality criteria were tested iteratively (using the weighted kappa statistic) for the level of agreement between users applying successive drafts of the criteria to different samples of information. The final set of criteria consisted of 19 questions plus an overall quality rating. Chance corrected agreement (weighted kappa) among the appraisers for the overall quality rating was 0.61 (0.60–0.62). The criteria cover the scope of the information resources, information on the condition, the test procedure and results, decision making, and the reliability of the information. The DISCERN-Genetics criteria will guide the production and appraisal of information produced for the public, and will facilitate the involvement of the public in decisions around genetic screening and testing.