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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 18

What the question is about and why it is important

A good quality publication will provide fair and impartial information. It is important that information about genetic testing is presented in a way that enables you to choose what is in your best interests. A publication should be honest and informative. It should not influence you by “promoting” particular tests or by using “shock tactics” to influence your decision about testing.

Rating the question

Your rating should be based on your impression of the information about genetic testing as a whole. The hints will help you develop a “feel” for the balance and bias of the information, but your own judgement will also be important. Here are some additional points to help you:

  • you should judge the information on its own merits, using the appraisal system outlined in DISCERN Genetics. Try not to be influenced by what you know about the author or producer - well-respected individuals (including doctors, researchers and charities) can produce poor quality information, and an unknown author or producer can produce information that meets high standards.
  • the information about the test should be drawn from a range of research and experience. You should be cautious about giving a high rating on this question to a publication that has not revealed any sources or relies solely on a single source of evidence (Question 16).
  • ideally, a publication should be independently reviewed and approved by experts or professional organisations and by patient groups. Evidence of an external assessment provides readers with some assurance that the information is unprejudiced. The assessment may be acknowledged in a declaration alongside copyright and production information, or in an Editorial Policy. However, this is not yet common practice and there are no consistent standards as to how this information should be collected and displayed.

Guidelines for rating the question:

  • 5: Yes - the information is balanced and unbiased
  • 2-4: Partially - some aspects of the information are unbalanced or biased
  • 1: No - the information is completely unbalanced or biased
Examples

We have devised simple examples here to demonstrate the quality criterion underlying Question 18. 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.

The simplest way of demonstrating this question is to provide fictitious examples of high and low scoring publications:

5 rating:

A commercial online family health encyclopedia (funded mainly through onsite advertising) includes a section on antenatal testing for a variety of genetic conditions. The information is attributed to an editorial team and their details are provided under About Us alongside information about the producer organisation and the editorial process. The information consists of an overview of each genetic condition, management and treatment options, and an analysis of the advantages and disadvantages of several diagnostic tests, including their accuracy, risks and interpretation. The authors also refer to the possibility of variation according to healthcare provider and locale. The implications of testing and the consequences of different decisions following a positive result are outlined and linked to personal testimonies from parents who chose a termination and from parents who chose to continue the pregnancy. The site provides links to online scientific sources and to sources of additional support information. The Home Page includes a statement of the producer organisation’s subscription to international health publisher standards and an endorsement from an independent public health research foundation. An online feedback page is also included with access to comments and reviews of the website from individual users and patient organisations.

1 rating:

An international genetic testing company website describes its testing service for an inherited neurological condition. The service is provided by two doctors, and a list of their medical qualifications is provided under About Us. They describe their service as internationally recognised for excellence in genetic testing and preventive healthcare although no external endorsement, accreditation or scientific record is provided to support this claim.

The site includes a brief outline of the condition, describing it as having unpleasant, degenerative symptoms which are distressing for sufferers and their families. Information about testing consists of the following:

We are at the forefront of genetic testing for this condition. We believe our clients have a right to the outstanding benefits offered by the astonishing breakthroughs in modern genetic medicine that will protect their health and that of their loved ones.

If this genetic condition runs in your family or you suspect you have symptoms, we strongly recommend testing to avoid a devastating fate. Early detection means you can benefit from effective prevention and treatments. Clients using our service also enjoy expert guidance and rapid turnaround time. Our tests are reliable and provide all the facts and reassurance you need. Read our client testimonial and see how you too can prevent this terrible disease becoming your destiny.

Brief descriptions of the test procedure and the cost are given, but no further information is provided about the test such as personal risk assessment, test accuracy or limitations, implications of results, alternative tests, or broader personal issues. No sources of evidence or sources of additional support and information are listed, and there are no independent endorsements.