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Discern Genetics Quality Criteria

Question 11

Does it provide support for shared decision making?

Hint: Look for suggestions of things to discuss with family, friends, doctors, or other health professionals concerning testing and screening

Guidance for question 11

What the question is about and why it is important

A good quality publication will provide information that enables you to participate in decisions about genetic screening and testing. The information should help you prepare for a consultation with a health professional to discuss genetic testing options. It should also highlight issues to discuss with family, friends or carers regarding your decision about genetic testing. The specific consequences of the test results are rated separately under Psychosocial Issues (Question13) and Impact on Partner and Relatives (Question 14).

Rating the question

Consider the publication as a whole and decide whether it encourages shared decision-making – perhaps by enabling you to prepare a list of specific issues to discuss regarding the best test choices for you. These issues should be made clear throughout the publication, rather than merely being queries arising from its deficiencies and gaps, and should be presented in the context of support and discussion with healthcare providers and family. How high you rate the publication will depend on your judgement of how well it supports you in sharing decisions about test choices. If you do not wish to share in decision-making about testing, rate the publication from the point of view of a carer or relative who wants to know more about your choices.

Guidelines for rating the question:

  • 5: yes - the publication provides good support for shared decision-making
  • 2 - 4: partially -the publication provides some support for shared decision-making
  • 1: no - the publication does not provide any support for shared decision-making

Examples

We have devised simple examples here to demonstrate the quality criterion underlying Question 11. 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) Huntington's Disease

A national charity website for people affected by Huntington's Disease outlines the testing procedure and the implications of the results. It lists the various people who may be affected by the test result – your partner, children, family, friends, employers - and provides a prompt list of issues you may want to consider and share with them when deciding whether or not to be tested. It also lists the role of various health professionals involved in testing and treatment for this condition, and highlights the types of support and information each can provide. In each case, decision-making issues relating to technical aspects of the testing procedure, interpretation and impact of results, and followup care are highlighted, but the publication also encourages readers to share emotional and practical worries (anxiety, relationships, family planning) with their healthcare team. All of this information is reinforced with endorsement to decide what is best for you regarding testing.

Example (ii) Inherited cancer

A local cancer patient support group newsletter provides the following information in a section on genetic testing:

The decision to be tested may be one of the most important issues you ever have to deal with. Individual reactions differ, and there are many things you might want to consider. These include the positive medical and psychological benefits to testing as well as some more negative outcomes, and available alternatives to testing such as regular symptom monitoring. These issues are outlined in detail in the following section. It may help to think about testing for a while before making a decision – perhaps keep a notebook of your thoughts for a few days and make a list of the pros and cons of testing for you. You may also find it helpful to discuss these issues with those close to you, bearing in mind that members of the same family may have very different feelings about testing. The counselling process before the test will also help you work through all these issues with your doctor or counsellor before finalising your choice.

Example (iii) Antenatal screening and testing

A government health department leaflet on antenatal screening and testing provides the following information:

Before deciding upon screening and diagnostic tests, you and your partner need to consider the risks and benefits of each stage of testing and what difference being tested (or not being tested) would make to your pregnancy and plans for a family. Take time to make sure you understand what the tests involve and what they can and can't tell you. The final decision rests with you and your partner, but healthcare staff are keen to support you in your decisions and are available to provide expert advice and information.

Partially rating:
Example (iv) Inherited cancer:

A hospital genetics department handout for patients testing positive for a mutation for an inherited cancer provides the following information about referral to specialist care:

Your oncologist will explain the test results in more detail and will also outline your treatment plan.

Additional rating notes: Specific choices and issues for patients to discuss with the doctor are not specified. Information-giving appears valued, but patients are not encouraged to be actively involved in decisions and discussions about their care.

Example (v) General

A popular healthcare book provides the following information in a section on genetic tests:

You may find taking a partner or close friend to appointments can be reassuring and can help you get more out of consultations.

Additional rating notes: There is no detail of the actual decisions or topics you might discuss, and relationships with healthcare professionals are not mentioned.

Example (vi) General

An online patient support group notice-board provides the following in a section on genetic tests:

The final decision must be taken by you and should not be the result of pressure from family or your healthcare provider.

Additional rating notes: No further guidance is provided on what types of issues may arise or how healthcare professionals and family could help with your decision.

1 Rating
Example (vii) Turner Syndrome

A public health genetics database provides information about antenatal and diagnostic testing for Turner Syndrome. It gives a detailed description of the features of the condition including the underlying genetic cause, antenatal screening and diagnostic testing procedures. It states that there is still debate amongst clinicians about the ethics of testing amongst certain groups, but the issues are not outlined and there is no explicit discussion of the implications of testing for patients which would support decision-making.

Example (viii) Neonatal screening

A maternity hospital leaflet for parents provides information on neonatal screening. It includes a brief description of the conditions being detected and the test procedure, which is a blood spot test. Some of the conditions are described as inherited with no further explanation of how they are passed on, or whether the parents, older children or future pregnancies will also be affected if the test is positive. Screening is described as aiming to detect babies more likely to have these conditions, and results are described as either indicating your baby is normal, or thought to have a condition which may require further action. The possibility that a baby may be found to be a carrier for a condition is also mentioned without any explanation of this term. The leaflet states that screening is strongly recommended because of the benefits of early detection and treatment of these serious conditions. The only mention of a role for parents is how to comfort their baby whilst the blood sample is being taken.

Additional rating notes: The leaflet does not present testing as an issue involving options and choices for parents, and does not refer to any of the wider issues or anxieties that parents might have. Parents are not encouraged to seek further information or discuss any specific issues with the healthcare team.