Table 3 Review frameworks in the UK and Western Australia

1. The views of the people seeking treatment in relation to the condition to be avoided, including their previous reproductive experience

2. The likely degree of suffering associated with the condition

3. The availability of effective therapy, now and in the future

4. The speed of degeneration in progressive disorders

5. The extent of any intellectual impairment

6. The social support available

7. The family circumstances of the people seeking treatment

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Essential

1. Is there a significant risk of a serious genetic abnormality or disease in the context of the family that is requesting the testing?

2. What is the genetic abnormality or disease that is to be tested for?

3. What experience with, and attitude to, the abnormality or disease does the family requesting the testing have?

4. What factors indicate that there is a risk that the embryo will be affected by the genetic abnormality or disease?

5. What is the level of impairment to body functions and structures that is usually associated with the abnormality or disease?

6. What difficulties would a person with the abnormality or disease be expected to have in participating in activities such as learning and applying knowledge, communication, mobility, self-care, employment and community, social and civic life?

Desirable

1. What is the level of support that would be required by a person who has the abnormality or disease?

2. What are the prospects for new and longer-term treatments and interventions for the condition?

3. What is the capacity of the family who are requesting the testing to provide the level of support required by a child with the abnormality or disease?

4. What clinical genetic and diagnostic data are to be used in the testing procedure?

5. What other testing options are available?

6. What level of information will be possible from the test, in terms of interpretation, sensitivity and specificity (includes error)?

7. Has the person requesting the testing been provided with counselling about the potential impact of testing and contact information for other persons or organizations that have experience with the condition?

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