Research Projects undertaken by the Centre:  
 
 

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• 1995 –1998
Human Genetics Research

• 1999 – 2001 Commercialisation of Human Genetic Technology

• 2002 – 2004 Legal and ethical regulation of the use and commercialisation of human biological mater

• 2002 – 2004 Genetic Discrimination in Australira

• 2004 – Biotechnology, Health and Environment Network: Ethical Legal and Social Intersections (BHENELSI)

• 2005 – 2007 Co-operative intellectual property management

• 2005 – 2007 Communicating genetic information in families: practical, legal, social and ethical issues

• 2005 – 2009 Facilitation and Regulation of Research and Development Involving Human Genetic Databanks



• 1995 –1998 Human Genetics Research
Aims -
Chief Investigators -
Books, Reports and Refereed Publications -


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• 1999 – 2001 Commercialisation of Human Genetic Technology
Aims -
Chief Investigators -
Books, Reports and Refereed Publications


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• 2002 – 2004 Legal and ethical regulation of the use and commercialisation of human biological material

Aims -
• make recommendations for the establishment of a regulatory regime for the proper collection, use and development of products from human biological research in an increasingly privatised environment;
• answer liminal questions about property interests (ownership, control and derivative claims) in human biological material;
• make recommendations to researchers, institutions and the legal profession on appropriate contracting terms and practices in this area;
• consider the appropriate regulatory mechanisms for regenerative tissue technology; and
• make contributions towards the maintenance of the highest ethical standards in Australian research involving humans.

Chief Investigators -

Don Chalmers, Dianne Nicol, Margaret Otlowski, and Loane Skene

Books, Reports and Refereed Publications -

L Skene (2002) ‘Genetics and artificial procreation’, in Eds Meulders-Klein, M-T; Deech R; Vlaardingerbroek, MT. Biomedicine, the Family and Human Rights, Kluwer Law International, The Netherlands, 107-121

L Skene (2002) ‘Legal issues in germ-line gene therapy: Ownership, consent and regulation’, in Eds JEJ Rasco, GM O'Sullivan and RA Ankeny, A Dividing Line? Towards an Ethics of Germline Gene Therapy, Cambridge University Press.

D Chalmers (2002) ‘Professional Self-Regulation and Guidelines in Assisted Reproduction’ in Journal of Law and Medicine 9, 414-428.

D Chalmers (2002) ‘The expectation gap, risk management and the Australian HREC system’ in Monash Bioethics Review 21, 39-58.

B Gogarty (2002) ‘What exactly is an exact copy? And Why it matters when trying to ban human reproductive cloning in Australia’ in Journal of Medical Ethics.

J Nielsen and Nicol D (2002) ‘Pharmaceuticals and Patents: the Conundrum of Access and Incentive’ in Australian Intellectual Property Journal, 13, 289.

D Nicol, Gogarty B and Chalmers D (2002) ‘Regulating Biomedical Advances: Embryonic Stem Cell Research’ in Macquarie Law Journal, 2, 31-59.

B Gogarty and Nicol D (2002) ‘The UK’s Cloning Laws, a View from the Antipodes’ in Murdoch University Electronic Journal of Law , 9(2).

L Skene (2002) ‘Arguments against people "owning" their own bodies, body parts and tissue’ in Macquarie Law Journal, 2, 165-176.

L Skene and Coady A (2002) ‘Genetic manipulation and our duty to posterity’ in Monash Bioethics Review, 21(2), 12-22.

L Skene (2002) ‘Proprietary rights in human bodies, body parts and tissue: Regulatory contexts and proposals for new laws’ in Legal Studies, 22(1), 102-127.

L Skene and Smallwood R (2002) ‘Informed Consent: Lessons from the Antipodes’ in British Medical Journal, 324, 39-41.

L Skene (2002) ‘Ownership of human tissue and the law’ in Nature Reviews Genetics, (UK) 3, 145-148.

L Skene (2002) ‘Who Owns Your Body? Legal Issues in the Ownership of Bodily Material’, in Trends in Molecular Medicine, 8(1), 48-49.

D Nicol and Nielsen J (2003) Patents and Medical Biotechnology: An Empirical Analysis of Issues Facing the Australian Industry, Centre for Law and Genetics, Occasional Paper No. 6.

D Nicol (2003) ‘The Impact of Patents on the Delivery of Genetic Tests in Australia’ in Today’s Life Science, 15(5), 22-27.

D Nicol (2003) ‘Balancing Access to Pharmaceuticals with Patent Rights’ in Monash Bioethics Review, 22, 50-62.

M Otlowski and Williamson B (2003) ‘Ethical and Legal Issues and the ‘New Genetics’ in Medical Journal of Australia, 178, 582-585.
(Also printed in the University of New South Wales Law Journal (2003) 26 at 764-769)

D Chalmers and Nicol D (2003) ‘Embryonic Stem Cell Research: Can the Law Balance Ethical, Scientific and Economic Values? (Part 2)’ in Law and Human Genome Review, 19, 91-108.

D Chalmers and Nicol D (2003) ‘Embryonic Stem Cell Research: Can the Law Balance Ethical, Scientific and Economic Values? (Part 1)’ in Law and Human Genome Review, 18, 43-53.

J Jabour-Green and Nicol D (2003) ‘Bioprospecting in Areas Outside National Jurisdiction: Antarctica and the Southern Ocean’ in Melbourne Journal of International Law, 4, 76-111.

D Nicol (2003) ‘Human Gene Patents: Under Whose Control?’ in Medical Journal of Australia, 179, 181-182.

D Chalmers (2004) ‘Commercialisation and Benefit Sharing: Legal, Ethical and Social Issues’ in M. Brannigan Cross-Cultural Biotechnology, Rowan and Littlefield Publishers Inc, pp 3-14.

D Nicol (2004) ‘Cross Cultural Issues in Balancing Patent Rights and Consumer Access to Biotechnological and Pharmaceutical Inventions’ In M Brannigan (ed) Cross Cultural Biotechnology Rowman& Littlefield Publishers Inc., pp 155-164.

L Skene (2004) ‘Legal regulation of genetic testing: balancing privacy and family interests’ in Annals of Bioethics.

D Chalmers (2004) ‘Research Involving Humans: A Time for Change?’ The Journal of Law, Medicine & in Ethics, 32(4) 583-495.

D Chalmers and Nicol D (2004) ‘Commercialisation of Biotechnology: Public Trust in Research’ in International Journal of Biotechnology, 6, 116-133.

O Mitnovetski and Nicol D (2004) ‘Are Patents for Methods of Medical Treatment Contrary to Public Order and Morality or ‘Generally Inconvenient’ in Journal of Medical Ethics, 30, 470-475.

D Nicol (2004) ‘Property in Human Tissue and the Right of Commercialisation: the Interface between Tangible and Intellectual Property’ in Monash University Law Review, 30, 139-164

L Skene (2004) ‘An Australian lawyer’s response to Dr Boyle’ in Journal of Medical Ethics, 30 (4).

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• 2002 – 2004 Genetic Discrimination in Australia http://www.gdproject.org

Aims -

• to advance the existing knowledge base, both nationally and internationally
• to establish comprehensive baseline data for further evaluative research
• to generate important outcomes for each of the three sectors, as well as a comprehensive overview of this important new Australian social issue
• to examine the social and legal implications of genetic discrimination in Australia to offer recommendations informing the development of appropriate law

Chief Investigators -

Margaret Otlowski and Sandy Taylor

Partner Investigator -

Kristine Barlow-Stewart

Research Fellows -

Mark Stranger and Susan Treloar

Books, Reports and Refereed Publications -

M Otlowski, Taylor, S and Barlow-Stewart K (2002) ‘Australian empirical study into genetic discrimination’ in Genetics in Medicine, 4(5), 392-395.

M Otlowski, Taylor, S and Barlow-Stewart K (2002) ‘Major study commencing into genetic discrimination in Australia’ in Journal of Law and Medicine, 10(1), 41-48.

M Otlowski, Taylor, S and Barlow-Stewart K (2002) ‘Australian empirical study into genetic discrimination’ in Eubios Journal of Asian and International Bioethics, 12(5), 164-167.

M Otlowski, Taylor S and Barlow-Stewart K (2003) ‘Genetic Discrimination: Too few data’ in European Journal of Human Genetics, 11(1): 1-2.

M Otlowski (2003) ‘Genetic Discrimination: Meeting the Challenges of an Emerging Issue’ in University of New South Law Journal, Forum, Genetics and the Law, 9, 15-18

Taylor S, Otlowski M, Barlow-Stewart K Treloar S, Stranger M and Chenoweth K (2004) ‘Investigating genetic discrimination in Australia: opportunities and challenges in the early stages’ in New Genetics and Society, 23(2), 225-239.

Treloar S, Taylor S, Otlowski M, Barlow- Stewart K, Stranger M and Chenoweth K (2004) ‘Methodological challenges in the study of genetic discrimination: A review’ in Community Genetics.

Barlow-Stewart, K., Taylor, S. & Otlowski, M. (2005) ‘Knowing your genes: freedom, burden or power?’ in S. Wilson, G. Meagher, R. Gibson, D. Denmark & M. Western (eds) Australian Social Attitudes: The First Report, UNSW Press, Sydney

Otlowski M, Barlow-Stewart K, Taylor S, Stranger M and Treloar, S (2007) ‘Investigating Genetic Discrimination In The Australian Life Insurance Sector: Use Of Genetic Test Results In Underwriting 1999-2003’, 14 Journal of Law and Medicine, 367-395.

Otlowski M, Taylor S, Barlow-Stewart K, Stranger M and Treloar S, (2007) ‘The Use of Legal Remedies in Australia for Pursuing Allegations of Genetic Discrimination: Findings from an Empirical Study’, 9 International Journal of Discrimination and the Law, 3-35.

Taylor S, Treloar S, Barlow-Stewart K, Otlowski M and Stranger M, (2007) ‘Investigating Genetic Discrimination in Australia: Perceptions and Experiences of Clinical Genetics Service Clients Regarding Coercion to Test, Insurance and Employment’, 5 Australian Journal of Emerging Technologies and Society, 63-83.

Taylor S, Treloar S, Barlow-Stewart K, Stranger M and Otlowski M, (2008) ‘Investigating Genetic Discrimination in Australia: A Large-scale Survey of Clinical Genetics Clients’, 74 Clinical Genetics 20-30.

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• 2004 – Biotechnology, Health and Environment Network: Ethical Legal and Social Intersections (BHENELSI)

Aims -

• to construct an adequately resourced and properly administered network structure that can be seen by the research community to be capable of facilitating and promoting multidisciplinary and cross-institutional collaboration on a national and international scale;
• to enlist the participation of leading scholars and researchers from Australia and overseas, from all relevant disciplines, that are engaging with the issues that arise from the new biotechnologies;
• through this engagement with leading scholars and researchers, to forge links with key institutions, centres and other organisations across the globe;
• to provide an open, scholarly, well managed and well resourced research environment that facilitates the development of research careers, both for early career researchers and postgraduate students, and in the process attracts these researchers to the field through the network.

Network Convenor -

Don Chalmers

Network Administrator -

Mark Stranger

Management Committee -

Belinda Bennett (USyd), Ben Boer (USyd), Susan Dodds (UoW), Wayne Hall (UQ), Ian Kerridge (USyd), Dianne Nicol (UTas), Margaret Otlowski (UTas)

Outcomes -

BHENELSI now has 142 participants (including 22 postgraduates) from a range of disciplines (eg. bioethics, economics, epidemiology, law, medicine, genetics, philosophy, management, sociology, psychology, social work, nursing, genetic counselling), from 13 different countries. The Network is linked to over 40 different universities, 43 different professional bodies, and 102 different research centres and institutes.
Access to the Network is via http://www.lawgenecentre.org/bhenelsi

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• 2005 – 2007 Co-operative intellectual property management

Aims -

Australia has world-class strengths in biotechnology research, but our industry is small and depends on access to intellectual property (IP) held by foreign owners. To survive in a highly competitive global marketplace, Australian institutions must find ways to co-operate with one another. Current approaches to IP management did not evolve in Australian conditions and are not designed to promote co-operation. In this project, we develop and refine two new co-operative models of IP management, the “IP clearinghouse” and “open source” models, and assess their viability in the context of the Australian biotechnology industry. The research breaks new theoretical ground and will lead to practical recommendations for industry and policymakers.

Chief Investigators -

Janet Elizabeth Hope, Dianne Nicol and John Braithwaite
Books, Reports and Refereed Publications -

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• 2005 – 2007 Communicating genetic information in families: practical, legal, social and ethical issues

Aims -

The outcomes of this study, will give evidence as to whether or not people do pass on genetic risk information to relatives, how they do it, what the barriers are, what their preferences are. It will also provide data so that mechanisms for best practice communication and clear guidelines for legal and health professionals can be developed. Effective communication and exchange of genetic risk information will benefit individual health and the health of future generations.

Chief Investigators -

Loane Skene, Maryanne Aitken and Martin Delatycki

Books, Reports and Refereed Publications -


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• 2005 – 2009 Facilitation and Regulation of Research and Development Involving Human Genetic Databanks

Aims -

• One of the major aims of this project is a critical analysis of options for regulation of human genetic databanks and implementation of reform strategies
• This project aims to analyse options for and implementation of privacy law reform and monitor and critically evaluate any changes introduced
• The project will examine ownership in the context of human genetic databanks, including a comparative analysis of civil and common law approaches
• The project will examine and provide submissions on the ALRC’s recommendations on gene patenting and licensing and protection of database information and undertake a comparative analysis of international approaches
• One of the aims of this project is to study the extent to which the concept of benefit-sharing could be tied to access to human genetic databanks
• This project will study the regulatory framework for stem cell technology and provide submissions into the review process and monitor and critically evaluate any changes introduced

Chief Investigators -

Don Chalmers, Dianne Nicol, Margaret Otlowski, and Loane Skene

Project Manager -

Mark Stranger

Books, Reports and Refereed Publications -

Stranger M, Chalmers D and Nicol D (2005) ‘Capital, Trust and Consultation: Databanks and Regulation in Australia’ in Critical Public Health,15(4) 349-358.

Stranger M (ed) (2007) Human Biotechnology and Public Trust: Trends, Perceptions and Regulation, Hobart: Centre for Law and Genetics.