Community consultation processes

1.17   One of the most important features of ALRC inquiries is the commitment to public engagement and community consultation. The ALRC-AHEC media release in February 2001, which responded to the Terms of Reference, expressly recognised that widespread public consultation would be a key feature of the genetic information Inquiry. As mentioned above, the reporting deadline for this Inquiry was extended expressly to facilitate and accommodate the high level of public participation. The Inquiry acknowledged from the beginning that while it was essential to become familiar with the latest developments and projected advances in this cutting-edge area of scientific research, in Australia and overseas:

we also recognise that this is an area of broad community interest and concern—so it is equally important that we consult widely and provide all Australians with an opportunity to have their say.

Public forums

1.18   The Inquiry organised a number of well-publicised, and generally well-attended, public forums in November–December 2001 and February–April 2002, in all capital cities and a number of major regional centres, as follows:

• Melbourne, 22 November 2001;
• Hobart, 26 November 2001;
• Perth, 3 December 2001;
• Adelaide, 5 December 2001;
• Brisbane, 12 December 2001;
• Byron Bay/Lismore, 15 December 2001;
• Newcastle, 25 February 2002;
• Canberra, 26 February 2002;
• Wollongong, 4 March 2002;
• Sydney, 12 March 2002;
• Parramatta, 13 March 2002;
• Darwin, 18 March 2002;
• Alice Springs, 19 March 2002;
• Townsville, 3 April 2002; and
• Cairns, 4 April 2002.

1.19   The format of these public forums involved a set presentation from representatives of the ALRC and AHEC, explaining the nature and processes of the Inquiry and highlighting the major issues, followed by comments and questions from the floor. Some meetings also featured a presentation from a leading genetic scientist, where a suitable person was available. Meetings tended to go for a minimum of two hours (the advertised length), and some lasted for up to three hours in order to ensure that everyone in attendance was given an opportunity to be heard.

Other meetings

1.20   Members of the Inquiry also participated in a number of well-attended meetings and workshops, held at the invitation of community, professional and industry organisations or public authorities. These included the Human Genetics Society of Australasia (HGSA), the Committee for the Economic Development of Australia, the Victorian Genetic Services Network, the Institute of Actuaries of Australia, the Anti-Discrimination Board of NSW, the Law Association for Asia and the Pacific, Royal North Shore Hospital Sydney, the University of NSW School of Community Medicine, Bronte Public School, the Chatswood (NSW) Rotary Club, Southern Cross University’s Byron Bay Summer Law School. The Inquiry also participated in a number of seminars and conferences aimed at lawyers and others interested in the regulation of biotechnology.

1.21   The Inquiry also arranged a very large number of targeted meetings with key stakeholders and interested parties. By the end of the process, 185 such meetings had taken place around Australia. These included meetings with:

• clinical genetics services, clinical geneticists, genetic counsellors and genetics educators—including the Queensland Clinical Genetics Service, the Public Health Genetics Working Group Victoria, the Committee of Deans of Australian Medical Schools, the Westmead Hospital Familial Cancer Service, and the Australian Medical Association;
• genetic support groups and disability advocacy groups—including the Genetics Support Council WA;
• organisations concerned with health consumer education and advocacy—including Liberty Victoria, the Australian Consumers Association (CHOICE), and the NSW Council for Civil Liberties;
• organisations concerned with indigenous health, medical and legal issues—including the Aboriginal sub-committee of the HREC of the Menzies School of Health and Research, the Central Australia Aboriginal Congress, the Central Australia Aboriginal Legal Aid Service, Professor Larissa Behrendt (University of Technology, Sydney), Professor Marcia Langton (University of Melbourne), and the Australian Institute of Aboriginal and Torres Strait Islander Studies;
• leading genetic research laboratories—including the Queensland Medical Research Institute, the Murdoch Childrens Research Institute, and the Peter MacCallum Cancer Institute;
• family cancer registers, pathology laboratories, genetic testing laboratories, and institutions holding newborn screening cards—including Genetic Technologies Pty Ltd, Sydney IVF, WA Research Tissue Network, Children’s Hospital at Westmead, and NSW Biochemical Genetics & Newborn Screening Services;
• federal, state and territory departments and agencies—including the the Department of Immigration and Multicultural and Indigenous Affairs (DIMIA), the Office of Gene Technology Regulator, the Therapeutic Goods Administration, and the Australian Health Ministers’ Advisory Council Group on Gene Patenting and Genetic Testing;
• peak employer groups, employee groups and trade unions—including the Australian Chamber of Commerce and Industry, the Australian Council of Trade Unions, and the Construction Forestry Mining and Energy Union;
• senior persons involved in the insurance industry—including officers of the Investment and Financial Services Association, the Insurance Council of Australia; the Financial Industry Complaints Service, the Institute of Actuaries of Australia, the Australian Securities and Investments Commission, and the ;
• federal, state and territory police officers and forensic services units—including the National Institute for Forensic Services, CrimTrac, and the Australian Federal Police;
• organisations concerned with privacy protection—including the Office of the Federal Privacy Commissioner and Privacy NSW; and
• organisations concerned with human rights protection—including the federal Human Rights and Equal Opportunity Commission and the NSW Anti-Discrimination Board.

1.22   Members of the Inquiry also made presentations in 2002 to the Einstein Institute for Science, Health and the Courts (EINSHAC) Conference in Rome (primarily concerned with educating judicial officers about genetic science and the use of expert evidence in this area), the Seventh International HUGO Human Genome Meeting in Shanghai (the major international conference for genetic researchers), the Genetics and Law Conference in London, and the Health and Law Policy Program in Toronto.

1.23   Fourteen meetings were held overseas in Denmark, Sweden, and the Netherlands with representatives from insurers, peak employer and employee bodies, and research ethics committees. After the release of DP 66, meetings were also held:

• in Chicago, with the executive of the National Conference of Commissioners on Uniform State Law;
• in New York, with Professor Dorothy Nelkin (New York University), Dr Thomas Murray (The Hastings Center) and Professor Adrienne Asch (Wellesley College);
• in Washington, DC, with Paul Steven Miller (Commissioner, Equal Employment Opportunity Commission); Associate Professor (Bioethicist and Oncologist, Georgetown University Medical Center); Barbara Fuller (Senior Policy Analyst, National Human Genome Research Institute); Dr Kathy Hudson, Gail Javitt and Susannah Baruch (Director and Policy Analysts, Genetics and Public Policy Center, Johns Hopkins University); Joanne Hustead (Senior Counsel, Health Privacy Project, Institute for Health Care Research and Policy, Georgetown University); the Hon Justice Gladys Kessler (United States District Court for the District of Columbia); Professor Karen Rothenberg (Dean, University of Maryland School of Law); Franklin Zweig (President, EINSHAC); Dr Sherrie Hans, Consultant to the Assistant Secretary of Health, and John P Fanning, Privacy Advocate, United States Department of Health and Human Services;
• in Minneapolis, with Dr Jeffrey Kahn (Director, Center for Bioethics, University of Minnesota), and executive members of the National Conference of Commissioners on Uniform State Law;
• in Toronto with Dr Ron Carter (Chair, Ontario Genetics Advisory Committee); Phil Jackson (Director, Strategic Health Policies, Ontario Ministry of Health and Long Term Care); Barbara Slater (Manager, Health Sciences Policy Unit, Ontario Ministry for Health and Long-Term Care); Professor Trudo Lemmens and Professor Colleen Flood (Health and Law Policy Program, University of Toronto); and
• in London with participants in the Genetics and Law Conference; Dr Mark Bale (UK Human Genetic Commissioner); and Professor Martin Partington (Law Commission of England and Wales).

Other means of promoting community engagement

1.24   The ALRC reworked sections of IP 26 in a plain language format for publication in the Hot Topics series produced by the State Library of New South Wales’ Legal Information Access Centre. Hot Topics aims to highlight areas of the law that are subject to change or public debate, with an audience including high school legal studies teachers. Hot Topic 36: Human Genetic Information was launched on 10 July 2002 at the State Library of New South Wales, with a panel discussion and question and answer session,^[20] before an audience of about 100 people.

1.25   There has been strong media interest in the Inquiry from the beginning, and this has been sustained throughout the life of the project. The launch of IP 26 and DP 66 attracted substantial media coverage, including television reports. The public forums also received substantial radio and television coverage in most of the cities in which they were held. The media also have referred to the Inquiry for comment on parallel developments in other jurisdictions, such as the release of papers by the United Kingdom’s Human Genetics Commission. As of mid-February 2003, the Inquiry had participated in about 170 separate interviews for radio, television, newspapers or magazines.

1.26    A number of scientific, professional and popular journals, such as Nature, Australian Doctor, Australian Biotechnology News and HQ also have provided coverage of particular issues being handled by the Inquiry, as have journals directed at judges, privacy practitioners, lawyers, industrial relations specialists, and insurance industry personnel.

Written submissions

1.27   The Inquiry has strongly encouraged interested persons and organisations to make written submissions to help advance the policy-making process. By mid-July 2002, when DP 66 was being finalised, the Inquiry had received 168 written submissions.^[21] Between the publication of DP 66 and the completion of the manuscript for this Report, another 148 written submissions were received by the Inquiry, bringing the total number of submissions to 316.

1.28   The submissions varied substantially in size and style, ranging from short notes written by individuals or families providing personal views and experiences, to large, well-researched documents prepared by government departments and agencies, research centres and laboratories, genetic support groups, industry bodies and professional associations. It is not merely being polite to state that the Inquiry has found all of the submissions to be very valuable in shaping its views and formulating its final recommendations. Much of the information provided in the institutional submissions probably could be obtained through direct approaches to the relevant bodies. However, the insights and experiences offered in the personal submissions are not readily available elsewhere, and the Inquiry deeply appreciates the time and trouble people have gone to in order to provide these. Some of this material is also deeply personal and sensitive, and in recognition of this the Inquiry left open the option of individuals or groups lodging submissions that were confidential in whole or in part. Of the total of 316 submissions, 34 have been treated as confidential (as requested).

Other assistance

1.29   Apart from those listed above as formal participants, the Inquiry received valuable assistance from a wide variety of individuals and organisations, in Australia and overseas, who provided advice, comments or research materials. The Inquiry expresses special thanks to: Sam Ahlin, Commonwealth Attorney-General’s Department; Dr Mary Anderlik, Institute for Bioethics, Health Policy and Law, University of Louisville; Associate Professor Ian Anderson, Melbourne University; John Anderson, CrimTrac; Professor Lori Andrews, Director of the Institute of Science, Law and Technology, Chicago-Kent College of Law; Dr Mark Bale, Secretary, UK Human Genetics Commission; Douglas Barry, Office of the Federal Privacy Commissioner; Lorana Bartels, NSW Attorney-General’s Department; Sara Bravini, Immigration Advice and Rights Centre; Julia Cabassi, Anti-Discrimination Board of NSW; Professor Ron Carter, Chair, Ontario Advisory Committee on Genetics; Laurette Chao, Migration Institute of Australia; Helen Cheung, Commonwealth Attorney-General’s Department; Alan Clayton; Professor Simon Cole, University of California–Irvine; Anne Deegan, Commonwealth Depart of Health and Ageing; Dr Carina Dennis, Australasian Correspondent, Nature; Lisa Devereux, Tissue Bank Manager, Peter MacCallum Cancer Institute; Alan Doble, Institute of Actuaries of Australia and Munich Reinsurance; Dr Carl Elliott, Center for Bioethics, University of Minnesota; Stewart Ellis, Comcare; Conor Flanagan, Legal Policy, Victoria Police; Professor Colleen Flood, University of Toronto; Barbara Fuller, National Human Genome Research Institute; John Gaudin, Office of the NSW Privacy Commissioner; Brendan Gogarty, Centre for Law and Genetics, University of Tasmania; Jackie Hickman, DIMIA; Dr Kathy Hudson, Genetics and Public Policy Center, Johns Hopkins University; Eilis Hughes, Genetic Health Services Victoria; Valerie Hurt, National Institutes of Health; Joanne Hustead, Health Privacy Project, Georgetown University; Graeme Innes, Human Rights and Equal Opportunity Commission; Phil Jackson, Director, Strategic Health Policies Branch, Ontario Ministry of Health and Long-Term Care; Professor Richard Johnstone, National Research Centre for Occupational Health and Safety Regulation, the Australian National University; Dr Eric Juengst, Center for Biomedical Ethics, Case Western Reserve University; Dr Josephine Johnston, Department of Bioethics, Dalhousie University; Dr Jeffrey Kahn, Director, Center for Bioethics, University of Minnesota; Dr Kathy King, DIMIA; Richard Konarski, DIMIA; Jocelyn Kula, Therapeutic Goods Administration; Dr Sonia Le Bris, Health Canada; Professor Stephen Leeder, Dean, University of Sydney Medical School; Professor Trudo Lemmens, University of Toronto; Timothy Leshan, National Human Genome Research Institute; Dr Richard Linsk, University of Michigan; Barbara Luby, Office of the Federal Privacy Commissioner; Professor Darryl Macer, Tsukuba University; Professor Angus MacDonald (Heriot-Watt University); Dr John MacMillan, Director, Queensland Clinical Genetics Service; Agnieszka Martin, DIMIA; Professor Nick Martin, Queensland Institute of Medical Research; David Mason, Human Rights and Equal Opportunity Commission; Professor John Mattick, Director, Australian Genome Research Facility; Professor Alexander McCall Smith, University of Edinburgh and Deputy Chair, Human Genetics Commission; Rita Maclachlan, Therapeutic Goods Administration; David Mico, IFSA; Paul Steven Miller, Commissioner, US Equal Employment Opportunity Commission; John Mobbs, CrimTrac; Dr Thomas Murray, Director, the Hastings Center; Professor Roxanne Mykitiuk, Osgoode Hall Law School, York University; Professor Dorothy Nelkin, New York University; Bruce Newey, Centre for Law and Genetics, University of Tasmania; Dr Ainsley Newson, London IDEAS Genetics Knowledge Park; Dr Dianne Nicol, Centre for Law and Genetics, University of Tasmania; Catherine Paice, DIMIA; Maritta Parsell, NATA; Dr Kenneth Pritzker, Pathologist-in-Chief, Mount Sinai Hospital, Toronto; Professor Sandy Raeburn, Centre for Medical Genetics, University of Nottingham; Nicole Rose, NSW Innocence Panel; Professor Karen Rothenberg, Dean, University of Maryland School of Law; Professor Mark Rothstein, Director, Institute for Bioethics, Health Policy and Law, University of Louisville; Professor Mary Segal, University of Pennsylvania School of Medicine; Dr Tom Shakespeare, Bioscience Centre, University of Newcastle (England); Katy Skinner, DIMIA; Barbara Slater, Manager, Health Sciences Policy Unit, Ontario Ministry for Health and Long-Term Care; Ian Smith, Genetic Technologies Corporation; Meena Sripathy, Immigration Advice and Rights Centre; Dr Alison Stewart, Chief Knowledge Officer, Public Health Genetics Unit, Strangeways Laboratory, Cambridge; Professor Grant Sutherland, Women and Children’s Hospital, Adelaide; Geraldine Taylor, DIMIA; Dr Luke Taylor, AIATSIS; Dr Susan Treloar, Queensland Institute of Medical Research; Dr Peter Vodicka, DIMIA; and Professor Dorothy Wertz, University of Massachusetts.