Hint: Look for
A good quality publication will provide details of how your test results are handled and stored. The results of tests for genetic conditions can be highly sensitive as they may have implications for other family members and for your insurance and employment Details of who will have access to your results is important - concerns about confidentiality may influence your decision to be tested or may encourage you to specify your preferences about who can access your results.
Rate the information according to whether it states explicitly who will have access to the test results. Topics to consider include how the information is handled (e.g. who gives you the test results – see Question 9 – and who receives copies) and stored (e.g. electronic databases, paper copies). The question cannot be used to tell you whether the procedures outlined are acceptable, but may encourage you to review or request changes to your existing arrangements e.g. disclosure to insurers - see Question 12.
Guidelines for rating the question:
We have devised simple examples here to demonstrate the quality criterion underlying Question 10. 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 in the Handbook
A hospital handout for patients has the following information about handling the results of a genetic test for cancer:
Our genetic counsellor will arrange the test and a date for you to return to discuss your results, which the hospital laboratory will send directly to the counsellor. The sample sent to the laboratory and the written results file have coded labels so that your name is not identifiable. The results file is posted back to the clinic counsellor using a special hospital mail service. If the result is positive, the counsellor will outline your care plan with you. If you decide to have treatment following this counselling session, the counsellor will also send your results to the consultant in the hospital who will be involved in your care. The counsellor will also seek your consent to send a copy of the report to your family doctor to be filed with your notes, which you are entitled to see at any time. All information is treated as strictly confidential and the results cannot be released to anyone other than these named professionals without your consent. The procedure for sending and storing this information conforms to the hospital’s confidentiality protocol regarding genetic test results. A copy of the protocol is available from the clinic on request. We do not give your results to insurers or employers without your consent, although you need to be aware that withholding this information may affect your insurance policy or employment contract.
A government health department leaflet on antenatal testing distributed to all pregnant women includes the following:
In all cases, your results will be added to your electronic patient record and will only be routinely accessible to you, your family doctor and midwife. They will contact you if they feel there is a need to share this information with any other professionals involved in your care, and all your decisions and preferences will be respected by your healthcare team and noted in your record.
A national patient support group website provides the following information on storage of results:
The result cannot be released to others without the formal consent of the person tested.
Additional rating notes: No further information is provided on who initially handles the result, where the results "reside", how they are accessed or how your consent is obtained.
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. 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. No further information about the test or results is provided.
Additional rating notes: There is no mention of how results are delivered, stored, handled or who has access to them.