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Genetic services in Victoria: A discussion paper

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In late 1995, the Department of Human Services responded to the then advances in the understanding of inherited disorders and the genetics of more common, multifactorial diseases by establishing a Working Group on Genetics Service Development. One of the primary goals of the Working Group was to provide advice to DHS on the needs and emerging issues in the supply of genetics services in Victoria, and how those demands may be managed. As a result, in January 1997, the Working Group provided DHS with a report entitled Genetic Services in Victoria: A Discussion Paper.

Contents

Contents

Foreword

Background and Draft Recommendations

1. Introduction

1.1 Implications of Progress in Genetics

1.2 Brief Overview of the Development of Genetic Services

2. Current Genetic Services

2.1 What Are Genetic Services?

2.2 Victoria's Service Delivery Model

2.2.1 Victorian Clinical Genetics Service

2.2.2 Genetic Screening and Testing Services in Victoria

2.2.3 Current Genetic Diagnostic Laboratory Services in Victoria

2.2.4 Specialist Genetic Services of the VCGS and Other Specialities in Major Hospitals

2.3 Genetic Educational Services

2.3.1 Professional Education and Training

2.3.2 Community Education

2.4 Epidemiology Services

3. Service Development Issues

3.1 Advances in Molecular Genetic Diagnosis

3.1.1 Developments in Cancer Genetic Services

3.1.2 Developments in Other Adult Genetic Services

3.2 Criteria for the Introduction of New Genetic Tests and Service Development

3.2.1 Central Coordination

3.3 Future Model of Clinical and Laboratory Services in Victoria

3.3.1 Genetic Outreach Services

3.3.2 Genetic Diagnostic Laboratory Services

3.3.3 Workforce Issues in Clinical Genetics

3.4 Information and Communication Issues

3.4.1 Genetics Education

3.4.2 Genetic Counselling

3.5 Ethical and Legal Issues

3.5.1 Informed Consent/Choice

3.5.2 Confidentiality and Privacy

3.6 Genetic Records and Databases

3.7 Research and Evaluation

3.8 Economic and Financial Implications

Conclusion

References

Appendix 1: The Working Group on Genetic Services Development

Appendix 2: The Scientific Basis of Human Molecular Genetics

Appendix 3: Current Genetic Screening and Testing Services in Victoria, 1996

Appendix 4: Current Best Advice About Familial Aspects of Breast Cancer

Appendix 5: Human Genetics Society of Australasia Guidelines for DNA Predictive Testing

Appendix 6: Proposed Guidelines on Ethical Aspects of Risk Assessment, Genetic Testing and Genetic Registers in Relation to Cancer

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