Choosing Genes for Future Children: Regulating Preimplantation Genetic Diagnosis
This was released at the Grand Hall, Parliament, 1st August 2006. The event was hosted by the Speaker of New Zealand's House of Representatives.
The main findings of the report are available (PDF, 181KB).
PDFs of chapters are available from the Social Science Research Network:
- Main Findings
- The Science and Clinical Utilisation of Pre-Birth Genetic Testing, with Particular Focus on PGD
- Maori Perspectives on Pre-Birth Genetic Testing with Particular Focus on PGD
- Ethical Issues
- Law and Regulation
Genes, Society and the Future Volume I
This two-volume report for Year 2 of the Project was released at the Grand Hall, Parliament, on 24 October 2007.
The main findings of the report are available (PDF, 229KB).
PDFs of chapters are available from the Social Science Research Network:
- Main Findings
- Preimplantation Genetic Diagnosis: Testing the Legal Boundaries
- The Advisory Committee on Reproductive Technologies: The Role of Public Consultation in Decision-Making
- Newborn Screening: Present and Future
- Legal Issues Relating to Newborn Screening
- New Possibilities for Newborn Genetic Screening: Screening for Genetic Susceptibility to Common Disease
- Researching Human Genetic Variation: An Examination of the Ethics of Genetic Research
- Establishing a Māori Ethical Framework for Genetic Research with Māori
- Genetic Testing and Microarray Technologies
- Array Comparative Genomic Hybridisation (aCGH): An Analysis of the Current Technology and its Future in Prenatal Diagnosis
Genes, Society and the Future Volume II
This two-volume report for Year 2 of the Project was released at the Grand Hall, Parliament, on 24 October 2007
The main findings of the report are available (PDF, 229KB).
PDFs of chapters are available from the Social Science Research Network:
- Introduction
- Setting the Scene
- Benefits and Harms in Genetic Testing of Minors
- Genetic Testing of Children Who Cannot Give Valid Consent
- Genetic Testing of Competent Minors
- Disclosure, Confidentiality and Privacy Issues
- Conclusions and Recommendations
Genes, Society and the Future: Volume III
Was released at the Grand Hall, Parliament, 4 March 2009
The event was hosted by the Minister of Justice and Minister responsible for the Law Commission, Hon Simon Power.
The report can be purchased from Thomson Reuters.
Publications
Snelling J. Implications For Providers And Patients: A Comment On The Regulatory Framework For Preimplantation Genetic Diagnosis In New Zealand, Medical Law International. 2006; 8: 23-49. ISSN: 0968-5332/06 - Downloadable Abstract (PDF, 67KB)
Henaghan M, Editorial: The Family of the Future, New Zealand Family Law Journal. 2005 - full article (PDF, 364KB)
Henaghan M & Wensley D. Preimplantation Genetic Diagnosis: A Discussion of Regulatory Mechanisms of Control from a New Zealand Perspective. Journal of International Biotechnology Law. 2005; 2(2): 45. Available from http://www.degruyter.de (accessed by paid subscription).
Submissions
Submission to the National Ethics Committee on Assisted Human Reproduction (NECAHR) – 'Guidelines for Preimplantation Genetic Diagnosis in New Zealand (PDF, 273KB)', December 2004.
Presentations
Ethical and Legal Issues about Archived Sample Collection, Presentation for Archived (FFPE) Tissue Workshop, Centre for Translational Cancer Research, Chair: Assoc Prof Parry Guilford 27 Oct 2010 Richman Wee.
Pharmacogenetics Research: The New Zealand legal, ethical and policy context, Presentation for the 6th Annual Carney Pharmacogenomics Symposium, Christchurch, 31 Aug 2010 Richman Wee.
Stored Tissue Samples for Research, Seminar for the Human Ethics Committee, University of Otago, 25 Jun 2010 Richman Wee.
Rethinking Privacy Safeguards for Emerging Technologies & Research in Genomics (PPT, 768KB), Privacy Issues Forum, 26 August 2008 Richman Wee.
The Field of Genetics - New Challenges For Health Privacy (PDF, 132KB), Privacy Issues Forum, 30 March 2006 - Richman Wee.
Regulating Preimplantation Genetic Diagnosis, New Zealand Bioethics Conference: Making People Better, Keynote Speech on 11 February 2006 Prof Sheila McLean.
Using embryos to make people better, New Zealand Bioethics Conference: Making People Better, 11 February 2006 Helen Davidson.
Genetic profiling in newborns: what's the harm? New Zealand Bioethics Conference: Making People Better, 11 February 2006 Dr Nikki Kerruish.
Researchers & their families, New Zealand Bioethics Conference: Making People Better, 11 February 2006 Genevieve Matthews.
Making better decisions? An indigenous perspective of preimplantation genetic diagnosis (PPT, 848KB), New Zealand Bioethics Conference: Making People Better, 11 February 2006 - Danny Tuato'o.
Genetic testing and screening: Envisioning changing expectations and future-proofing the newborn screening programme (PPT, 411KB), New Zealand Bioethics Conference: Making People Better, 11 February 2006 - Richman Wee.
Reproductive autonomy and the right to choose genetic characteristics, New Zealand Bioethics Conference: Making People Better, 11 February 2006 Dana Wensley.
Preimplantation genetic diagnosis in New Zealand: A tool for pre-birth genetic screening (PPT, 580KB), Health Screening Symposium (3 to 4 October 2005) - Helen Davidson & Jeanne Snelling.
New Zealand Newborn Screening Programme: Reinforcing Assurances for the Future (PPT, 185KB), NZ Newborn Screening Programme and New Technologies Health Screening Symposium (3 to 4 October 2005).
New Zealand Newborn Screening Programme: Reinforcing Assurances for the Future, News of Interest from across the Tasman (PPT, 473KB), Health Screening Symposium (3 to 4 October 2005) - Genevieve Matthews and Richman Wee.
Bibliography
Bibliography for Goal 1: Determining the impact of genetic testing technologies on pre-birth decisions (PDF, 232KB)