NSW Genetic Health Guidelines Part B: Framework

NSW Genetic Health Guidelines Part B: Framework for legal and ethical use or disclosure of genetic information

Continuing care of the patient

Genetic condition or status as carrier confirmed by personal history, family history or genetic testing

Patient/authorised representative provided with information regarding implications for genetic relatives and informed that genetic information may be provided to their relatives without consent (see p 21)

Patient/authorised representative advised to contact relatives or consent sought for contact to be made (see pp 22-25)

• If consent to use or disclose is withheld

Health practitioners with appropriate expertise assess whether threat to genetic relatives is serious (see pp 25-29)

• If a serious threat to health, life or safety exists

Health practitioners with appropriate expertise assess whether use or disclosure is necessary to lessen or prevent threat (see pp 25-29)

• If there is reasonable belief that use or disclosure are necessary to lessen or prevent the threat

Patient/authorised representative provided with further information and consent to use or disclose sought (see pp 28-36)

• If consent is still withheld

Authorising medical practitioner reviews the situation (see pp 25-29)

• If there is reasonable belief that use or disclosure are necessary to lessen or prevent the threat

Contact made with genetic relatives in accordance with these Guidelines and, in general, patient informed of this action (see p 8)

• If genetic relatives seek advice from the disclosing health practitioner

Process of cascade contact used to seek consent to disclose to additional genetic relatives (see p 32)