Genetic testing issues examined at Trans-Tasman roundtable
31 July 2013
Genetic testing issues to be examined at Trans-Tasman roundtable
Ethical, legal and social aspects of the rapidly developing field of genetic testing will be the focus of discussion for top minds from both sides of the Tasman, gathering in Queenstown on Sunday (4 August) for the 4th Australia-New Zealand Roundtable on Genomics.
There will be two main sessions - one examining the issues surrounding prenatal testing for genetic disorders, while the other focusing on the managing of incidental findings and current issues in research involving Maori.
Both countries have produced significant research in the field, through the Australian Law Reform Commission (ALRC) reports on the protection of human genetic information and gene patents and the recent multi-year New Zealand Law Foundation-sponsored Human Genome Research Project (HGRP) which was led by the University of Otago’s Law Faculty.
This roundtable is jointly organised by the Centre for Society, Governance and Science (SoGoS), formed last year under the umbrella of the Otago Faculty of Law, and the Human Genetics Society of Australasia’s Ethics and Social Issues Committee (HGSA) with the support of NZ Genomics Ltd, Genetics Otago, Centre for Translational Cancer Research (University of Otago) and the New Zealand Law Foundation.
Earlier roundtables have examined a wide range of legal, ethical, cultural and policy issues generated by the rapid expansion of genetic knowledge and technology.
Otago Law Faculty Dean, Professor Mark Henaghan, says the roundtable meetings are incredibly valuable as a way of both sharing knowledge and bringing together a group of leading thinkers to work through the issues.
“We will be covering a variety of topics around which well-researched guidance and policy need to be discussed and developed so situations can be dealt with in a consistent manner as and when they arise.”
The first session will be chaired by Dr Jan Hodgson, Chair of the HGSA’s Ethics and Social Issues Committee.
“The first session will begin with comment from relevant experts on the scientific, practical, legal and ethical aspects of prenatal testing. Then a hypothetical clinical scenario will be introduced to generate discussion, touching on areas such as non-invasive prenatal screening (NIPS) to check if a foetus has any genetic abnormalities,” Dr Hodgson says.
The second session, chaired by Professor Ingrid Winship, the Australian partner who co-initiated the Roundtable, will look at current issues in research involving Maori and examine the whole area of incidental findings.
“The latter involves the question of how do we deal with unexpected findings from genetic testing that may be potentially more clinically important than the presenting disease itself?”
The roundtable discussion sessions will involve a number of distinguished academics and researchers including: Professor Winship, who is the Inaugural Chair of Adult Clinical Genetics at the University of Melbourne; Associate Professor Colin Gavaghan, Director of the New Zealand Law Foundation Centre for Law and Policy in Emerging Technologies at the University of Otago; Associate Professor Cris Print, joint Director of the New Zealand Bioinformatics Institute; and Associate Professor Clara Gaff, a certified genetic counsellor and a member of the HGSA Ethics and Social Issues Committee.
Roundtable attendees will also be addressed by Tony Lough, the CEO of NZ Genomics Ltd (NZGL), which is a collaboration involving the three universities - Otago, Massey and Auckland - with the Crown to deliver a genomics infrastructure to NZ researchers. NZGL is promoting the event to foster multi-disciplinary and public discussions about issues arising from health and medical uses of genomic technology.
More than 80 people are expected to attend the sessions. Organiser Richman Wee, from the Faculty of Law, says there is still space for late registrations.
The event is being held as part of the HGSA’s conference in Queenstown.
Key speakers - In order of participation during the Roundtable sessions:
1. Jan Hodgson, PhD
Jan Hodgson, Chair of the Ethics and Social Issues Committee for HGSA (ESIC), has worked in health care settings for many years as a critical care nurse, counsellor and health educator. She has a BSc (Hons) in Health Studies, a Graduate Diploma in Genetic Counselling and a PhD. She is currently a Senior Lecturer in the Department of Paediatrics at the University of Melbourne and co-ordinates several components of the Master of Genetic Counselling program including Reflective Practice, Ethics, Health Communication and Healthcare Research Methods. Jan’s PhD research, ‘Testing Times, Challenging Choices’, explored women’s decision-making about prenatal testing. Her current ARC-funded research is ‘A longitudinal study of women’s experiences following a prenatal diagnosis of a fetal abnormality (The PeTALS study)’. Jan is an experienced qualitative researcher and is a Member Scholar of the International Institute of Qualitative Methodology. Her other research interests include medical and genetic communication, talking about disability in prenatal settings, informed decision-making in the context of non-directive genetic counselling, and perinatal palliative care. Jan is a Board Member of the Down Syndrome Association of Victoria.
2. Marleen Susman,
Marleen Susman completed her PhD in 2012, supported by a Melbourne University Postgraduate Scholarship. She originally completed a Bachelor of Science in Genetics (and Biochemistry) at La Trobe University in 1975, before embarking on a career in clinical cytogenetics. She has worked in many laboratories locally, as well as overseas at the University of Newcastle, UK. Prior to enrolling in her PhD, Marleen was the director of Cytogenetic Services, a private cytogenetics laboratory in Melbourne. During her career in cytogenetics, Marleen also completed a Graduate Certificate in Scientific Writing, MSc in History and Philosophy of Science (Science in Society), Graduate Diploma in Genetic Counselling, and the FHGSA (Cytogenetics). She is currently working as the Genetic Support Coordinator at the Genetic Support Network of Victoria, and as a Research Officer with Public Health Genetics at the Murdoch Children’s Research Institute. In addition to being a member of the HGSA ESIC Committee, Marleen is a committee member of the Victorian branch of the HGSA as well as the joint HGSA/RANZCOG Prenatal Diagnosis and Screening Committee.
3. Ainsley Newson,
Ainsley Newson is Senior Lecturer in Bioethics at the Centre for Values, Ethics and the Law in Medicine (VELiM), University of Sydney, and is Coordinator of the Sydney Bioethics Masters Program. Ainsley’s research interests include ethical aspects of clinical and reproductive decision-making in genetics - especially prenatal diagnosis and family communication, genetics and public health, mechanisms of clinical ethics support, and ethical issues in emerging technologies such as synthetic biology. Ainsley has Bachelor’s degrees in Science (human genetics) and Law, and a PhD in Medical Ethics, all gained from the University of Melbourne. She undertook postdoctoral work in the Medical Ethics Unit at Imperial College London and then worked for nearly seven years at the Centre for Ethics in Medicine at the University of Bristol, being promoted to Senior Lecturer in 2008. Ainsley has published several papers dealing with the ethical aspects of non-invasive prenatal testing (NIPT). She was a member of the ethics work package of the SAFE Network (European Commission, Framework 6) and, for three years, was a co-investigator on the RAPID project (National Institute of Health Research, UK). She has also spoken and written about NIPT for the general public and media. Ainsley is a member of ESIC and also a member of the Clinical Ethics Advisory Panel for NSW Health.
4. Dr Sue White, MBBS,
Sue White is a clinical geneticist at the Victorian Clinical Genetics Services in Melbourne. She studied medicine at Monash University, trained in paediatrics in Melbourne and completed her genetics training in Melbourne and Oxford. As a consultant geneticist she has worked in Melbourne and at Great Ormond Street Hospital in London. Her clinical work is primarily in dysmorphology and prenatal diagnosis. In both areas, she has experienced the challenges and opportunities that new technologies bring. She is an honorary Senior Lecturer at University of Melbourne and teaches medical students, paediatric doctors and genetic counsellors. Her research is in dysmorphology in the areas of gene discovery, phenotype delineation, the impact of diagnoses on families, and communication between doctors and families about dysmorphism. She has published more than 35 peer-reviewed articles and two book chapters. In her spare time, she raises two children, is completing a Professional Writing and Editing degree at RMIT and writes fiction for young adults.
5. Associate Professor Colin
Colin Gavaghan is an Associate Professor in the Faculty of Law at the University of Otago, where he is also the first Director of the New Zealand Law Foundation Centre for Law & Policy in Emerging Technologies. He has an LLB (Hons) and a PhD from Glasgow University, where he lectured prior to moving to Dunedin. He is the author of ‘Defending the Genetic Supermarket: the law and ethics of selecting the next generation’ (Routledge-Cavendish, 2007), and has published on a wide range of issues concerning the legal implications of genetics, neuroscience, nanotechnology and medical practice.
6. Professor Mark
Mark specialises in family law and is a Barrister and Solicitor of the High Court of New Zealand. He is co-author of Family Law Policy in New Zealand (4th ed, LexisNexis Butterworths, 2013) and joint author of Family Law in New Zealand, (15th ed, LexisNexis Butterworths, 2012). Mark is the joint author of Relationship Property on Death (Thomson Brookers, 2004) which won the 2005 J F Northey prize for the best published law book in New Zealand, Relationship Property Consolidated Legislation and Analysis (Brookers Thomson Group, 2001) and sole author of Care of Children (LexisNexis Butterworths, 2005). He is the sole author of Health Professionals and Trust (Routledge, 2012). He is an author and member of the editorial board for LexisNexis Family Law Service and the New Zealand Family Law Journal and author of a number of articles on family law. Mark is on the editorial boards of Child and Family Law Quarterly (the leading UK journal on children’s issues), The International Journal of Human Rights (the leading UK journal on human rights) and Society, Governance and Science (the new international and multidisciplinary electronic journal). Mark was the principal investigator of the Human Genome Research Project ‘Law, Ethics and Policy for the Future: Te Kaupapa Rangahau Ira Tāngata’ that was funded by the New Zealand Law Foundation.
7. Professor Ingrid
Professor Ingrid Winship was appointed as the Inaugural Chair of Adult Clinical Genetics at the University of Melbourne, and Executive Research Director for Melbourne Health, in November 2006. Professor Winship has a wide range of clinical and research interests in inherited disorders, focusing on those with onset in adulthood, including familial cancer, and where foreknowledge of genotype may influence clinical or lifestyle measures to create positive patient outcomes. She has experience in gene discovery and in the translation of such discovery into clinical practice. She has also highlighted societal implications of her discipline with research into the ethical, legal, cultural and psychosocial domains of genetic technology. She is a member of the NHMRC Human Genetics Advisory Committee and the Victorian Cancer Agency, a consultative council for Victoria for cancer research. She is on the Board of the Walter and Eliza Hall Institute, and on the Scientific Advisory Council of the Bio21 Cluster, where she chairs the Hospital Research Directors Forum.
Professor Cristin Print
Associate Professor Cristin Print is a medically-qualified scientist (MBChB, PhD) who works in the field of bioinformatics. He graduated from Auckland Medical School in 1989, then worked as a house surgeon and performed asthma research in Dunedin, before completing a PhD at the University of Auckland. He worked overseas for ten years investigating molecular changes in disease, first at the Walter and Elisa Hall Institute in Melbourne, Australia, then at Cambridge University, UK, where he was a Fellow of St Edmund’s College. While overseas he co-founded a Japanese biotechnology company in the field of bioinformatics, and returned to the University of Auckland where he works on clinical genomic research in breast cancer, melanoma and colon cancer. Cris is currently joint Director of the New Zealand Bioinformatics Institute and Chair of the New Zealand Genomics Limited Project Advisory Group.
9. Associate Professor Clara
Clara Gaff is leading an initiative to introduce genomics into health care in Melbourne. Clara completed a PhD in molecular genetics before becoming a genetic counsellor. She received the National Society of Genetic Counselors’ inaugural International Award for her achievements and leadership in genetic counselling internationally. Clara is now manager of Genomic Medicine at the Walter and Eliza Hall Institute and Principal Strategic Development Officer at the Victorian Comprehensive Cancer Centre. She is a member of ESIC and the NHMRC Human Genetic Advisory Committee. Through honorary academic appointments with The University of Melbourne and Murdoch Children’s Research Institute, Clara continues to pursue her research interests in the mainstreaming of genetics in clinical practice, consent and genetic testing, and family communication.
10. Phillip Wilcox, PhD
Phil Wilcox is a molecular geneticist with experience in applied genomics and statistical genetics. He is the current convenor of MapNet, a NZ-wide collective of gene mapping scientists (see https://mapnet.agresearch.co.nz/mediawiki/index.php/MapNet:About ) and the Project Leader of the Virtual Institute for Statistical Genetics (www.visg.co.nz). He currently works for Scion, a Crown Research Institute in Rotorua. Dr Wilcox also established Te Aroturuki, a group of Maori scientists and advisors who developed a process to assist Western research scientists engage with Maori communities regarding controversial technologies, and he has been working with researchers at Universities of Otago and Waikato in developing engagement processes with Maori communities in relation to genomics and biobanking. Dr Wilcox is of Ngāti Rakaipaaka, Rongomaiwahine, Ngāti Kahungunu ki te Wairoa and Pākeha descent.
11. Jo Fitzpatrick
Jo Fitzpatrick (tribal affiliation: Rongomaiwahine, Ngati Kahungunu) has been active in the consumer health and disability sector with a particular interest in informed consent, especially in relation to rights in health and disability services and health information. She was the Director of Women’s Health Action Trust, an evidence-based consumer advocacy organisation, for nine years. She has represented consumers on National Screening Unit consumer reference groups; HIV in Pregnancy and Breast Screening; health information working groups; Standards NZ on health information and fertility services; and the Trans-Tasman Agency for Therapeutic Products Advertising Code subcommittee. She has chaired the Health and Disability NGO Working group, the NZ Consumer Collaboration, and the Health Information Strategy Advisory Committee Consumer Forum. She is a member of the National Health IT Board Consumer Forum, an independent Board member of DiabetesNZ, a consumer representative on Organ Donation NZ, a board member of the Auckland Women’s Health Council, and a member of the Institute of Directors. She has recently been appointed by the Minister of Health to serve as a member of the Ethics Committee on Assisted Reproductive Technology (ECART).
Lead organiser for the 4th Australia-New Zealand Roundtable on Genomics:
Richman provides comments on the legal, ethical and policy issues about the use of human tissue and personal information for health research and biobanking, as well as issues relating to clinical or research initiatives involving genomic studies. He is involved with the Law Foundation-sponsored Centre for Law and Policy in Emerging Technologies, University of Otago. He initiated the proposal for the international and multidisciplinary Centre for Society, Governance and Science (SoGoS) that is led by the Faculty of Law, University of Otago. He is an editorial board member for the electronic-journal ‘Society, Governance and Science’ and a member of ESIC. He was the first policy advisor for the Health Research Council, and the project manager and a researcher for the Law Foundation-sponsored Human Genome Research Project ‘Law, Ethics and Policy for the Future: Te Kaupapa Rangahau Ira Tāngata’. He was appointed by the Health Ministers of current and previous Governments to serve as the legal member and chairperson for the Multi-Region Ethics Committee.
About the organising bodies involved:
• Centre for Society, Governance and Science (led by the Faculty of Law, University of Otago; Co-Directors: Professor Mark Henaghan and Associate Professor Colin Gavaghan)
The Centre for Society, Governance & Science (SoGoS) promotes and undertakes research on the challenges of integrating medical and scientific advancements with society in the face of changing approaches being used to govern citizens and institutions, as well as their rights, relationships and responsibilities. SOGOS aims to be an internationally renowned multidisciplinary research centre or ‘think tank’ that undertakes research and policy development work for governments, professional bodies and NGOs for the public good. SoGoS was established in 2012 with objectives that include advancing ‘science in society’ initiatives and engaging with the public.
• Ethics and Social Issues Committee (ESIC) of the Human Genetics Society of Australasia (HGSA)
ESIC, a key committee of the HGSA, is responsible for offering expert opinion to Council and the Executive, and for developing and reviewing HGSA policy and position statements on a wide range of ethical issues.