Public consultation for this document CLOSED on Saturday 12 April 2008.
Public consultation and submissions
During the development process, feedback was sought on drafts of the Use and disclosure of genetic information to a patient’s genetic relatives under Section 95AA of the Privacy Act 1988 (Cth) – Guidelines for health practitioners in the private sector (the Guidelines) via three separate consultations. Submissions received during the consultation period have been considered and reflected in the final document, as appropriate, under the guidance of the Working Committee.
The consultation process
Three consultation periods have ensured openness and transparency of the processes and allowed input during the various stages of the Guidelines' development. Submissions were received from a variety of stakeholders including individuals, government agencies, health organisations, health professionals, consumer groups and legal firms.
The first of the consultations was a targeted consultation held from 12 September to 12 October 2007. The purpose of this consultation was to refine the scope of the guidelines and identify issues that needed to be addressed. Twelve submissions were received during this phase.
A second consultation was held from 23 February to 12 April 2008. This consultation was open to the public and attracted eighteen submissions. The responses received demonstrated that further revision of the draft Guidelines was necessary. Several important issues were raised and experts were engaged to discuss the issues and explore solutions.
NHMRC decided a third and final consultation was necessary to ensure no matters remained unresolved and to provide stakeholders with an opportunity to raise any final comments. This targeted consultation was held from 13 to 27 February 2009 and NHMRC received a total of twenty-three submissions.
Submissions
Of the 53 submissions made to the NHMRC, consent has been obtained to make 43 available on this website.
First Consultation
Australian Medical Association
Department of Health and Human Services Tasmania
Human Genetics Society of Australasia
Victorian Clinical Genetics Services
Department of Health Western Australia
Second Consultation
Human Genetics Society of Australasia
Royal College of Pathologists of Australasia
Department of Health Western Australia
Department of Health and Ageing
Genetic Support Network of Victoria
Royal Australian and New Zealand College of Obstetricians and Gynaecologists
Australasian Society of Genetic Counsellors
Breast Cancer Network Australia
Third Consultation
Australian Medical Association
Caroline Chisholm Centre for Health Ethics
Human Genetics Society of Australasia
Motor Neurone Disease Association of Australia