Table 3 Australian Federal and NSW State guidelines on the use and disclosure of genetic information to a patient’s relatives for health professionals and theoretical and clinical application of the Guidelines

1

Use or disclosure of genetic information without consent may proceed only when the authorising medical practitioner has a reasonable belief that this is necessary to lessen or prevent a serious threat to the life, health or safety of a genetic relative.

11A

11B

13A

13B

12A

12B

14A

14B

2

Specific ethical considerations must be taken into account when making a decision about whether or not to use or disclose genetic information without consent.

3

Reasonable steps must be taken to obtain the consent of the patient or his or her authorised representative to use or disclose genetic information.

4

The authorising medical practitioner should have a significant role in the care of the patient and sufficient knowledge of the patient’s condition and its genetic basis to take responsibility for decision-making about use or disclosure.

5

Prior to any decision concerning use or disclosure, the authorising medical practitioner must discuss the case with other health practitioners with appropriate expertise to assess fully the specific situation.

6

Where practicable, the identity of the patient should not be apparent or readily ascertainable in the course of inter-professional communication.

7

Disclosure to genetic relatives should be limited to genetic information that is necessary for communicating the increased risk and should avoid identifying the patient or conveying that there was no consent for the disclosure.

8

Disclosure of genetic information without consent should generally be limited to relatives no further removed than third degree relatives.

9

All stages of the process must be fully documented, including how the decision to use or disclose without consent was made.