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Discern Genetics Quality Criteria

Question 1

Are the aims clear?

Hint: Look for a clear indication in the information of

  • what it is about
  • what it is meant to cover (and what topics are excluded)
  • who might find it useful

Note: It may be necessary to search for the aims especially in web based information

If the answer to question 1 is 'No', go directly to question 3

Guidance for question 12

What the question is about and why it is important

A good quality publication will alert you to the fact that being tested for a genetic condition can lead to discrimination. It is possible that receiving a positive test result may make you potentially risky and expensive in the eyes of insurers and employers. You need to have clear information about the implications of taking a test and disclosing the results to such bodies in order to make an informed choice about testing.

The following section outlines the main issues. More detailed information is provided by the Resources. Note that this question is primarily about financial and employment discrimination - social issues arising from testing are covered by Questions 13 and 14.

In the UK, insurers are allowed to collect details of your current health status and medical history, including family history, when issuing health or life insurance policies. At present, there are legal limits regarding the genetic testing information that insurers can request but this is a changing situation and varies according to the particular condition or disease. In some circumstances, there may be advantages to taking a test and revealing the results. For example, insurers take family history into account when setting premiums, so a negative test result for a hereditary condition may reduce your assessed risk and premiums (e.g. Huntington's Disease).

Good quality information about genetic testing should include an overview of these issues. A detailed analysis is more likely to be found in specialised publications, and is therefore linked to the need for additional resources and information (Question 15). As legislation and practice can vary from country to country, you also need to know whether the information you are using is relevant to your locale (see Question 19) - particularly on the web, which is a largely international forum. The information should also incorporate the latest developments (Question 17).

Rating the question

Rate the information according to whether issues of discrimination are discussed. This question is not relevant for some genetic conditions and tests (e.g. routine antenatal and neonatal screening) - you will need to use your judgement to decide whether it is appropriate for the publication you are rating.

Guidelines for rating the question:

  • 5: yes the publication provides a clear discussion of issues of discrimination surrounding genetic testing
  • 2 - 4: partially the publication refers to discrimination, but the information is unclear or incomplete
  • 1: no the publication does not provide any discussion of issues discrimination
  • N/A - this question is not appropriate for this publication and should be rated "Not applicable".

Examples

We have devised simple examples here to demonstrate the quality criterion underlying Question 7. However, the information rated by this question should also have clear sources and referencing where appropriate as outlined in Question 16. For further guidance and examples, please refer to the section on Question 16

5 Rating:
Example (i) General

A Website produced by a patient support group attached to a local hospital provides the following information:

If a mutation is found that increases your risk of developing this condition, it may have an adverse effect on your personal finances. The terms or costs of your existing mortgages, pension plans and insurance policies may change or you may have difficulty obtaining new ones. Terms and benefits linked to your employment may also become an issue. It is wise to review your financial and employment arrangements before testing. You may find it helpful to compare different policies or to seek out independent advice. You should also discuss the accessibility of your medical records with your doctor, and check whether your existing financial arrangements will still be valid if you do not disclose test results. It is also worth finding out whether there are any benefits arising from disclosure. There are many helpful organisations providing confidential, independent legal advice and employment rights information - we have listed the main national agencies at the end of this leaflet. The healthcare team can also provide guidance on these matters.

Partially rating:
Example (ii) Inherited muscle disorder

A booklet produced by a national charity provides information about an inherited muscle disorder which includes the following:

If you have the faulty gene, this information may affect your financial security.

Additional rating notes: No further details are provided to explain how financial security is affected.

1 Rating
Example (iii) General

An international health foundation website provides detailed information on testing for genetic conditions, including many personal and decision-making issues. However, it does not mention financial or legal discrimination.