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Report on the Review of the Assisted Reproductive Treatment Act 1988 (Sa)

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Report on the Review of the Assisted Reproductive Treatment Act 1988 (Sa) REPORT ON THE REVIEW OF THE ASSISTED REPRODUCTIVE TREATMENT ACT 1988 (SA) Sonia Allan 2017 S. ALLAN A.R.T. ACT REVIEW 2017 i S. ALLAN A.R.T. ACT REVIEW 2017 ii Sonia Allan ________________________________ Report on the Review of the Assisted Reproductive Treatment Act 1988 (SA) Prepared by Dr. Sonia Allan for the Minister for Health January 2017 Copyright © 2017 S. ALLAN A.R.T. ACT REVIEW 2017 iii Review of the Assisted Reproductive Treatment Act 1988 Terms of Reference The review will evaluate the operation and effectiveness of significant changes made to the Act in 2010, which had a legislative requirement for review after five years. The changes included: 1. the replacement of the previous licensing scheme with a registration scheme for clinics providing assisted reproductive treatment (A.R.T.); 2. the dissolution of the SA Council on Reproductive Technology and its Code of Ethical Conduct; 3. the requirement that the welfare of any child born as a consequence of A.R.T. is to be treated as being of paramount importance, and accepted as a fundamental principle, in respect of the operation of the Act, as well as in the provision of A.R.T.; 4. allowing for the establishment of a donor conception register; 5. amending eligibility for access to A.R.T. services—noting that such conditions relate to the circumstances in which, and to whom, A.R.T. may be provided; and 6. provisions regarding record keeping and confidentiality. S. ALLAN A.R.T. ACT REVIEW 2017 iv Table of Contents: Page Terms of Reference iv List of Figures ix List of Tables ix Case Studies ix Acknowledgements x Dedication xi Executive Summary xii Table of Findings xviii Table of Recommendations xxix Chapter Page 1 Introduction 1 1.1 Background: Changes to South Australian A.R.T. Law 2 1.2 The Legislated Review 6 1.3 Reviewer Background, and Conduct of the Review 7 1.4 The Scope of the Review 9 1.5 Consultation: Call for Written Submissions 11 1.6 Consultation: Fact Sheets and Posters 12 1.7 Targeted Consultation Meetings 12 1.8 Advice to all Participants 13 1.9 Written and Oral Submissions Received 13 1.10 Parliamentary Briefings 15 1.11 Conclusion 15 2 Oversight of Clinics and Providers of A.R.T. 17 2.1 Introduction 18 2.2 Registration Requirements for Providers of A.R.T. 19 S. ALLAN A.R.T. ACT REVIEW 2017 v 2.3 Registration Requirements do not apply in relation to donor 21 insemination 2.4 Changes to Regulation and Oversight 25 2.5 The Regulatory Approach in South Australia 35 2.6 Review of the Operation and Effectiveness of the Act 48 2.7 Conclusion 48 3 Paramountcy of the Welfare of the Child 51 3.1 Introduction 52 3.2 Focus of the Review 53 3.3 Support for the Provision 53 3.4 Operationalising the Welfare of the Child Principle 55 3.5 Screening for Hereditable or Infectious Disease 56 3.6 Screening Applicants for Risk of Harm to a Child(ren) 69 3.7 Screening of Donors for Prior Criminal Convictions 93 3.8 Research on the Short and Long Term Outcomes of A.R.T. 95 3.9 Inclusion of the Word ‘Health’ in the Paramountcy Provision 100 3.10 Donor Conception and the Welfare Principle 100 3.11 Conclusion 101 4 Establishment of a Donor Conception Register 103 4.1 Introduction 104 4.2 Why is Access to Information Important? 107 4.3 South Australia: Calls for Information 119 4.4 What has Happened Since? 120 4.5 Current Practices by Clinics in South Australia 122 4.6 Past Records 126 4.7 Conclusion 159 5 Further Matters regarding Donor Conception and Access to 161 Information 5.1 Introduction 162 S. ALLAN A.R.T. ACT REVIEW 2017 vi 5.2 Operation of the Donor Conception Register 163 5.3 Voluntary Registration on Donor Conception Register 183 5.4 Information to be Held on the Donor Conception Register 184 5.5 Notification of Donor Conceived Status, Birth Registration, and Birth 186 Certificates 5.6 Responsibility for Costs related to the Register 198 5.7 Clinics and the Recording and Reporting of Information 199 5.8 Conclusion 202 6 Access to ART 205 6.1 Introduction 206 6.2 Changes to Previous Legislation and Regulations 207 6.3 Operation and Effectiveness of the Act in Relation to Access Provisions 208 amended in 2010 6.4 Other Matters Raised in Relation to Access 215 6.5 Conclusion 228 7 Record Keeping 229 7.1 Introduction 230 7.2 Record Keeping – Previous Regulations 230 7.3 Record Keeping – Current Regulations 231 7.4 Operation and Effectiveness of the Act: Record Keeping 232 7.5 Conclusion 234 8 Conclusion 235 Appendices Page 1 Consultation letters inviting contribution 250 2 Consultation Poster 252 3 Meetings and live consultations 253 4 Written submissions 256 5 Comments on YourSAy 260 S. ALLAN A.R.T. ACT REVIEW 2017 vii 6 HFEA Welfare of the Child Guidance 261 7 Information Regarding Past Records Concerning A.R.T. And Donor 266 Conception Held at Queen Elizabeth Hospital 8 Information Regarding Past Records Concerning A.R.T. And Donor 268 Conception Held at Adelaide University / ACN 9 Birth Registration Form 271 INDEX 273 S. ALLAN A.R.T. ACT REVIEW 2017 viii List of Figures: Figure 1: Written submissions to the review, by type (page 14) Figure 2: Existing and recommended elements for effective co-regulatory governance of A.R.T. (page 50) Figure 3: Example Donor Conception Relationships: 10 Family Limit (page 113) Figure 4: Recommendations for Donor Conception Register and Access to Information in South Australia (page 204) List of Tables: Table 1: Summary of changes to the Assisted Reproductive Treatment Act 1998 (SA) (page 3) Table 2: HFEA Guidance Note – Factors to be considered for the welfare of the child (page 80) Table 3: Donor conception register: Assisted Reproductive Treatment Act 1988 s 15 (page 120) Case Studies: Case Study 1: Damian (page 127) Case Study 2: Tiffany (page 128) S. ALLAN A.R.T. ACT REVIEW 2017 ix ACKNOWLEDGEMENTS As the independent reviewer of the Assisted Reproductive Treatment Act 1988 (SA) (the Act), I gratefully acknowledge the many people who shared with me their stories, wisdom, knowledge, experience, and views. Their contributions to this review have enabled me to better understand the key issues and complexities affecting people born as a result of assisted reproductive treatment, consumers and industry in South Australia. Via submissions, meetings, and follow up discussions, they were able to inform me of how current practices do or do not meet community expectations, and what more they felt could be done to give effect to the provisions and intentions of the Act. I thank the Honourable Jack Snelling, Minister for Health for putting his faith in me to lead the review regarding the operation and effectiveness of the Act following changes that were made in 2010. The task was a weighty one, which required consideration of the regulatory model adopted in South Australia, matters related to the paramountcy of the child born as a result of assisted reproductive treatment (A.R.T.), the establishment of a donor conception register, access to A.R.T., and record keeping. It is an honour to have been appointed to undertake it. I acknowledge the assistance and support of Dr. Zoe Gill, Senior Policy Officer, and Ms. Samantha Parker, Policy Officer, in the Department for Health and Ageing who provided executive assistance to the review. I commend them for their attention to detail and efforts as the review proceeded. I am grateful for the contributions each of them made, and wish them well in the new positions each of them moved onto in late 2016 I also pay thanks to people within the Department for Health and Ageing including (but not limited to) Skye Jacobi, Executive Director Policy & Governance; Prue Reid, Director Legal Governance and Insurance Services; Rachel Newrick, Assistant Director, Policy and Intergovernment Relations; Lee Wightman, Principal Consultant, Policy and Intergovernment Relations; Alex Trinca, Policy Officer, Policy and Intergovernment Relations; and Simone McDonnell, Ministerial Adviser to the Minister for Health. Thank you also to Helen Paues, Registrar, Registration Branch of Consumer Business Services, who provided me with information regarding the register of Births, Deaths and Marriages. To all of the MPs and staffers who attended the Parliamentary Briefings, and/or have followed the progress of the review, I thank you also for your interest and care in relation to the matters that were being considered, and place faith and hope in you that you will support the recommendations in this report. I hope I have well represented the views of the many people who spoke with me. Where there is oversight or error the responsibility remains mine. S. ALLAN A.R.T. ACT REVIEW 2017 x DEDICATION To the many people who have accessed A.R.T. who seek to build families and put their faith in others to do so; who spoke of hope, happiness, and at times, sadness. To all those born as a result. To the donor-conceived children and adults, some of them now parents themselves, who seek information from an era in which secrecy and anonymity was the norm; who spoke of feeling hurt, fear, confusion, distrust, and a longing to be able to understand their beginnings and their kinship ties. To all of the donors of reproductive materials and the recipients, who have built families, sought information themselves, and who embrace openness. To those who have persistently called for a donor conception register to be established in South Australia.
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