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.
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.
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:
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:
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.
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.