Guidelines for Health Practitioners in the Private Sector Disclosure of 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 medical indemnity team at Tego have the experience to guide you around the steps you need to take when considering disclosure of genetic information.

Here are some of the documented steps that need to be taken:

  • “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 increased risk, avoid identifying the patient and go no further than third-degree relatives.”

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A Major Issue with Privacy and Genetic Information

Documentation is an essential part of the consent process, particularly, it is crucial when dealing with the disclosure and usage of genetic information. Every stage must be communicated and documented from assessment to decision-making to the disclosure process.

The guidelines recommend always noting:

  • Who and when the patient or their authorised representative was informed of the implications of the status and genetic condition of their relatives.
  • If there is any Involvement of any other healthcare professionals during the consent process.
  • If consent is withheld, the reasons why must be explained by an authorised representative or the patient.
  • Any specific issues that had an impact on the consent process like the patient’s language or capacity, and the exact steps taken to address these issues. 

Tego – Protecting You and Your Practice  

As medical indemnity insurance providers in Australia, we will cover your practice with medical indemnity insurance, medical malpractice insurance, doctors indemnity insurance, medical practice insurance, GP medical indemnity insurance, and more. If you are a health practitioner with Tego, your medical indemnity insurance comes with 24/7 medico-legal advice and support to guide you through risks associated with disclosure of genetic information.

This publication is general in nature and is not comprehensive or constitutes legal or medical advice. You should seek legal, medical or other professional advice before relying on any content, and practice proper clinical decision making with regard to individual circumstances. Persons implementing any recommendations contained in this publication must exercise their own independent skill or judgment or seek appropriate professional advice relevant to their own particular practice. Compliance with any recommendations will not in any way guarantee discharge of the duty of care owed to patients and others coming into contact with the health professional or practice. Tego Insurance Pty Ltd is not responsible to you or anyone else for any loss su­ffered in connection with the use of this information.