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Discern Genetics Quality Criteria

Question 15

Does it provide details of additional sources of support and information?

Hint: Look for links to other sources of information, e.g. references in the text, websites, other literature, telephone numbers, postal addresses, help lines, support groups, other health professionals.

Guidance for question 15

What the question is about and why it is important

A good quality publication will enable you to find further information about testing for a genetic condition. This is important because the publication may not provide you with all the information you need for making an informed choice, and you should be able to trace further information easily.

Rating the question

Additional sources of support and information can be reading materials or organisations such as charities and research institutes. They are often included under headings such as Useful addresses, Resources, Contacts and Further Reading. A Bibliography or Reference List also provides additional information (as well as providing the sources of the information for the publication – see Question 16). In an online publication, access to other online information may be provided through links within the text or under the above headings on the site menu or map.

The details provided should enable you to find additional information easily. If an online link is provided, this should be functional and take you to another website or publication where clear details of the information producer are available. If organisations are listed, contact details should be included. If printed publications are listed, the details should include the title, and the author, producer and publisher (and date and ISBN if it is a book).

Many information producers such as national charities or government health departments list the contact details of their own organisation’s branches. Whilst these may be useful for information about local services and support groups, they are unlikely to provide different information or perspectives on testing choices, and you should be cautious about giving a high rating to a publication that only provides these details.

Please note: if the publication lists any additional sources, it will rate above 1 on this question. There is no “gold standard” for a minimum number of additional sources listed.

Guidelines for rating the question:

  • 5: Yes- the publication provides full details of any additional sources of information other than local branches of the same organisation
  • 2-4: Partially - the publication provides details of additional sources, but the details are incomplete or only consist of local branches of the
    same organisation.
  • 1: No - No additional sources of information are provided.

Examples

5 rating:
Example (i) Antenatal testing- Down’s Syndrome in the UK (a fictitious leaflet using real references & organisations)

A health authority leaflet about genetic testing for Down's Syndrome during pregnancy concludes with two sections – References and Advice and Support Services as follows:

References:
  1. 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
  2. 2. 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. Review abstract and Plain English Summary available here
Advice and Support Services

Antenatal Results and Choices (ARC): A national charity providing non-directional information and support to parents on all aspects of antenatal screening and testing. 73 Charlotte Street, London W1T 4PN. Helpline: 0207 631 0285, Tel: 0207 631 0280

Testing for Down's Syndrome in Pregnancy: A booklet produced by UK National Screening Committee, Institute of Health Sciences, Old Road, Headington, Oxford OX3 7LF. Tel: 01865 226 666.(the booklet can be downloaded free from the website).

Contact a family: A national charity providing support to families with disabled children, including those with genetic conditions. 209-211 City Road, London EC1V 1JN. Helpline: 0808 808 3555, Tel: 020 7608 8700.

Down's Syndrome Association: A national charity providing information and support for living successfully with Down's Syndrome. Langdon Down Centre, 2a Langdon Park, Teddington, TW11 9PS. Tel: 0845 230 0372.

Partially rating:
Example (ii) Inherited cancer

A website produced by a national cancer charity provides information on genetic testing procedures. Under a section entitled Further Support, it lists contact details of its branches throughout the country, including web links where available.

Additional rating notes: No independent resources are listed.

1 Rating
Example (iii) General
A leaflet produced by a genetic testing company is on display in a local pharmacy. It provides detailed information about several genetic conditions with onset in adulthood, including background effects, causes and available treatments. It describes the tests the company produces that are on sale direct to the public and gives the company's contact details. However, there are no additional sources of support or information mentioned anywhere in the leaflet.