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References

References for Background (in alphabetical order)

Ademiluyi G, Rees CE, Sheard CE. Evaluation the reliability and validity of three tools to assess the quality of health information on the internet. Patient Education and Counselling. 2003, 50: 151-5.

Bartels U, Hargrave D, Lau L, Esquembre C, Humpl T, Bouffet E. Analysis of paediatric neur-oncological information on the internet in German language. (Article in German). Klinische Padiatrie, 2003, 215: 352-7.

Bessell TL, Anderson JN, Silagy CA, Sansom LN, Hiller JE. Surfing, self-medicating and safety: buying non-prescrption and complementary medicines via the internet. Quality & Safety in Health Care, 2003, 12: 88-92.

British Medical Journal Special Issue on Genetics. British Medical Journal, 2001, 322, 28 April

British Medical Journal Special Issue on the Internet. British Medical Journal. 2002, 324, 9 March.

Charnock D, Shepperd S. DISCERN on the internet: workshop participants' views and experiences. Health Education Research. 2004, 19, 440-446.

Charnock D, Shepperd S, Needham G, Gann R. DISCERN: An instrument for judging the quality of written consumer health information on treatment choices. Journal of Epidemiology and Community Health 1999, 53:105-111.

Clisby N, Charnock D. DISCERN/CASP Workshops 2000. Final Project Report, October 2000. Critical Appraisal Skills Programme (CASP), Institute of Health Sciences, Oxford.

Disability Discrimination Act 2005. London: The Stationery Office Limited. ISBN 0 10 541105 1. www.opsi.gov.uk/acts/acts2005/20050013.htm

Fleiss JL. The measurement of interrater agreement. In Statistical methods for rates and proportions. 2nd Edition. John Wiley, New York: 1981.

Genetic and Rare Diseases Information Centre (UK) National Institutes of Health information service for patients and health professionals. http://rarediseases.info.nih.gov (US)

GeneWatch UK www.genewatch.org A not-for-profit organisation working to ensure that genetic technologies are developed and used in the public interest.

Godolphin W, Towle A, McKendry R. Evaluation of the quality of patient information to support shared decision-making. Health Expectations, 2001, 4: 235-42.

Griffiths KM, Christensen H. The quality and accessibility of Australian depression sites on the World Wide Web. Medical Journal of Australia, 2002, 176: Suppl S97-104.

Hargrave D, Bartels U, Lau L, Esquembre C, Bouffet E. Quality of childhhod brain tumour information on the Internet in French language. Bulletin du Cancer, 2003, 90: 650-5.

Ilic D, Bessell TL, Silagy CA, Green S. Specialised medical search-engines are no better than general search-engines in sourcing consumer information about androgen deficiency. Human Reproduction, 2003, 18: 557-61.

Ilic D, Risbridger G, Green S. Searching the Internet for information on prostate cancer screening: an assessment of quality. Urology, 2004, 64: 112-6.

OMIM- Online Mendelian Inheritance in Man (US) National Institutes of Health database of research articles on human genes and genetic disorders. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM

NELH - National Electronic Library for Health (UK). www.nelh.nhs.uk

A digital library for the NHS providing access to evidence-based information on conditions and treatment. Patient users are welcome, although NELH recommends NHS Direct Online www.nhsdirect.nhs.uk

Macmillan Cancer Relief. Directory of information materials for people with cancer 2004/5. 5th Edition, Macmillan: 2005. Online version available on the website - www.macmillan.org.uk

Molassiotis A, Xu M. Quality and safety issues of web-based information about herbal medicines in the treatment of cancer. Complementary Therapies in Medicine, 2004, 12: 217-27.

Maloney S, Ilic D, Green S. Accessibility, nature and quality of health information on the internet: a survey on osteoarthritis. Rheumatology, 2005, 44: 382-5.

New England Journal of Medicine Special Issue on Genomic Medicine. New England Journal of Medicine, 2003, 349, 4 September.

Sanger S, Nickel J, Huth A, Ollenschlager G. well-informed on health matters - how well? The German Clearinghouse for Patient Information - objective, background and methods. Gesundheitswesen. 2002, 64: 391-7.

Rees CD, Ford JE. Sheard CE. Evaluation the reliability of DISCERN: a tool for assessing the quality of written information on treatment choices. Patient Education and Counselling, 2002, 47: 273-5.

Robinson TR. Genetics for Dummies. Wiley: Indianapolis, 2005. ISBN 13: 978 0 7645 9554 7

Rose P, Lucassen A. Practical Genetics for Primary Care. Oxford University Press: Oxford, 1999. ISBN 0 19 262931 X

Shepperd S, Charnock D. Against internet exceptionalism. (Editorial) British Medical Journal, 2002, 324: 556-7.

Shepperd S, Charnock D, Cook A. A 5-star rating system for rating the quality of information based on DISCERN. Health Information and Libraries Review, 2002, 19, 201-205.

Shepperd, S., Farndon, P., Grainge, V., Oliver, S., Parker, M., Perera, R., Bedford, H., Elliman, D., Kent, A., Rose, P. DISCERN-Genetics: quality criteria for information on genetic testing. In press European Journal of Human Genetics

The German Clearing House for Patient Information www.patienten-information.de

UK Human Genetics Commission: Genes Direct. Ensuring the effective oversight of genetic tests supplied directly to the public. A report to the Human Genetics Commission, March 2003. Produced by the Department of Health. Available at www.hgc.gov.uk

References for the DISCERN Genetics Questions

For information about the genetic conditions and tests described throughout section 3, please refer to the Resources section.

Q5: Risk

Tay Sachs and Huntington's Disease:

OMIM- Online Mendelian Inheritance in Man (US) National Institutes of Health database of research articles on human genes and genetic disorders. www.ncbi.nlm.nih.gov/entrez/query.fcgi?db

Antenatal screening:

Rose P, Lucassen A. Practical Genetics for Primary Care. Oxford University Press: Oxford, 1999. ISBN 0 19 262931 X

Morris JK, Mutton DE, Alberman E. Revised estimates of the maternal age specific live birth prevalence of Down's syndrome. Journal of Medical Screening, 2002, 9: 2-6.

Q 7, 15, 16 and 19

Amniocentesis and risk of miscarriage:

Alfirevic Z, Sundberg, K. Brigham S. Amniocentesis and chorionic villus sampling for prenatal diagnosis. The Cochrane Database of Systematic Reviews 2003, Issue 3. Art No: CD003252. DOI: 10.1002/14651858.CD003252. Available free online - The Cochrane Library 2006 Issue 1 www3.interscience.wiley.com/cgi-bin/mrwhome/106568753/HOME. Review abstract and Plain English Summary available at http://www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD003252/frame.html

Royal College of Obstetricians and Gynaecologists (RCOG). Amniocentesis and chorionic villus sampling Greentop Guideline No.8 (3rd Edition). RCOG: London, January 2005. Available free from the RCOG Website: www.rcog.org.uk/resources/Public/pdf/aminiocentesis_chorionicjan2005.pdf

Q12

Discrimination, Insurance and Employment

Association of British Insurers (ABI) Insurance & Genetic Tests: What you need to know. March 2003 www.abi.org.uk/Display/default.asp?Menu_ID=946&Menu_All=1,946,0&Child_ID=131

European Group on Ethics in Science & New Technologies (EGE) Ethical Aspects of Genetic Testing in the Workplace. Opinion No.18, 28 July 2003. http://europa.eu.int/comm/european_group_ethics/docs/avis18EN.pdf

Genetics and Insurance Committee (GAIC; Department of Health). Third Report January to December 2004. www.advisorybodies.doh.gov.uk/genetics/gaic/gaicthirdreport.pdf

Genewatch UK Report Genetic Testing in the Workplace. June 2003. www.genewatch.org/HumanGen/Publications/reports.htm

Summers N. Genetic Testing for employment: susceptibility and exposure to hazardous substances. Paper for the Advisory Committee on Toxic Substances, February 2004. ACTS/10/2004. www.hse.gov.uk/aboutus/hsc/iacs/acts/250304/paper10.pdf