Privacy and genetic information

The National Health and Medical Research Council (NHMRC) has produced Guidelines for Health Practitioners in the Private Sector on using and disclosing information to a patient’s genetic relatives.  They apply to private practitioners and organisations that obtained genetic information about a living person after 21 December 2001.
 
The guidelines include the following steps in considering disclosure of genetic information:

• Reasonable steps must be taken to obtain the consent of the patient to disclose their genetic information. Appendix 2 to the guidelines includes sample information to include in a privacy policy or leaflet and a consent form
• Use or disclosure of a patient’s genetic information, without consent, only when an ‘authorising’ medical practitioner has a reasonable belief it is necessary to lessen or prevent a serious threat to the life, health or safety of a genetic relative
• The ‘authorising’ medical practitioner should have a significant role in the care of the patient and sufficient knowledge of their  condition and its genetic basis to take responsibility for decision making
• Before any disclosures, discuss the potential need for disclosure with professional colleagues with the necessary expertise, using de-identified information
• Disclosure without consent should generally be limited to that necessary to communicate the increase risk, avoid identifying the patient and go no further than third-degree relatives. 

Documentation

Documentation is a crucial part of the consent process in all circumstances but is particularly important when dealing with the use and disclosure of genetic information.  All stages of the assessment, decision-making and disclosure process should be documented fully. 
 
The guidelines recommend noting:

• When and by whom the patient or their authorised representative was informed of the implications of the genetic condition or status for their relatives
• Involvement of any other health professionals in the consent process
• If consent is withheld, the reasons given by the patient or the authorised representative
• Any particular issues that may have had an impact on the consent process such as the patient’s language or capacity, and what steps were taken to address these issues. 

Further resources

OAIC - Use and disclosure of genetic information
NHMRC - Genetic testing information for health professionals