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Professor EmeritusMargaret Otlowski

Emeritus Professor

Office of LT Performance

Orcid identifier0000-0003-4707-4325 (opens in a new tab)⁠
  • Emeritus Professor
    Office of LT Performance
  • +61 3 6226 7569 (Work)
  • Faculty of Law, Law, Private Bag 89, Hobart, Tas, 7001, Australia

RESEARCH SUMMARy

Margaret's principal areas of research expertise are in relation to end-of-life issues/voluntary assisted dying and aspects of law and genetics, with particular focus on genetic discrimination, privacy and regulatory issues.

Margaret uses doctrinal research methods and critical legal analysis to examine laws and practices in health care and research to evaluate their effectiveness and identify areas for reform or where new forms of regulation are required. This is also sometimes supplemented with empirical research methods including surveys and interviews. She partners with academics and practitioners in law and health related disciplines and has received public funding to address particular legal-ethical challenges arising from technological developments in health care. This has included focus on beginning of life (artificial conception, surrogacy) and end of life issues including voluntary assisted dying. Over the last two decades, her research has focused predominantly on legal and ethical issues raised by technological developments with genetic testing and more recently genomic sequencing.

Through her books, chapters, articles as well as submissions to public inquiries and presentations she provides insight into contemporary challenges in these areas and guidance on law and policy through recommendations for reform. Her work is frequently cited and has been influential in shaping law and policy in her key areas of expertise.

Margaret frequently collaborates with researchers from law and other disciplines in Australia as well as the UK, US and Canada. She is the Australian representative for the Expert Panel for the International Genetic Discrimination Observatory which involves collaboration with researchers from across the globe. She has been Chief Investigator on numerous grants with funding from ARC, NHMRC and Genomics Health Future Mission, involving collaborations with a range of partners including University of Sydney, Monash University, University of Melbourne, Swinburne University, University of Western Australia, Garvan Institute, Children’s Cancer Institute and Kids’ Cancer Centre. Internationally, she has collaborated with researchers from a range of institutions including HeLEX at Oxford, University of Toronto and University of Alberta, Canada and University of Iowa and University of Indiana in the US.

FUNDED PROJECTS

  • GRANT
    Data Storage and Security in Genomic Research and Clinical Contexts: Facilitating Transparency, Community Input & Two-way Learning
    2 Sep 2024 - 31 Mar 2026
    People funded by this grant:
    • Newett L,
    • Hermes A,
    • Griffiths K,
    • Brown A,
    • Cannizzo F
    Project Total: $51,749; This small-scale qualitative project will obtain and provide information about the genomic data storage, and security processes, associated with Australian research and clinical contexts. The project will collect information from and for people involved in genomic data storage and security, and First Nation community and organisation representatives. Funded by: MRFF LINEAGE Ethical governance for clinical and genomic data - Targeted Research Projects; Australian National University; Monash University; Flinders University; Australian Research Data Commons; Bellberry Limited; University of Tasmania.
  • GRANT
    Disentangling the Privacy Implications of Genetic Information
    31 Jul 2024 - 31 Jan 2026
    People funded by this grant:
    • Gyngell C,
    • Otlowski M,
    • Newson A,
    • Luo Y,
    • Gaff C
    Project Total: $55,947; This project will develop a new framework for addressing genetic privacy, taking account of the particular characteristics of genomic information and will explore the practical and regulatory implications of a detailed, multifaceted understanding of genetic privacy. Funded by: MRFF LINEAGE Ethical governance for clinical and genomic data - Targeted Research Projects; University of Melbourne; University of Sydney; Murdoch Children's Research Institute; Melbourne Genomics; University of Tasmania.
  • GRANT
    gEnomics4newborns: integrating Ethics and Equity with Effectiveness and Economics for genomic newborn screening
    1 Nov 2022 - 30 Jun 2027
    People funded by this grant:
    • Norris S,
    • Howard K,
    • Newson A,
    • Kariyawasam D,
    • Watson J
    Project Total: $2,117,960; This project aims to identify Australian community views on the ethical, legal and social implications of genomic newborn screening to inform clinical and policy decision making. Funded by: Medical Research Future Fund - Genomics Health Futures Mission 2021 Stream 3; University of Sydney; University of Tasmania.
  • GRANT
    Ethical governance for clinical and genomic data
    1 Jul 2022 - 31 Aug 2028
    People funded by this grant:
    • Newson A,
    • Nielsen J,
    • Otlowski M,
    • Eckstein L,
    • Nicol D
    Project Total: $4,999,986; This program of work will produce a comprehensive national genomic data governance framework for managing the generation and exchange of clinical and genomic datasets. The overarching aim of the project is to create a framework that takes into account the ethical, legal and social issues associated with the production and use of clinical and genomic datasets, in order to achieve more effective implementation and use of datasets. Funded by: Medical Research Future Fund - Genomics Health Futures Mission 2021 Stream 3; University of Sydney; University of Adelaide; University of Tasmania.
  • GRANT
    Moratorium on Genetic Testing and Life Insurance: Monitoring the Impact
    30 Jun 2020 - 30 Jun 2023
    People funded by this grant:
    • Lacaze P,
    • Otlowski M
    Project Total: $499,999; This project comes within the ELSI (Ethical, Legal and Social Issues) stream of the Genomics Health Futures Mission funding. It seeks to address an evidence gap - to monitor the impact of the moratorium on life insurers' use of genetic test information for insurance underwriting purposes. In doing so, it directly addresses the issue of genetic discrimination which has had a deterrent effect in Australia for the uptake of recommended clinical genetic testing as well as participation in genetic/genomic research. Funded by: Medical Research Future Fund - Grant-Genomics Health Futures Mission ELSI scheme; Monash University; University of Tasmania.
  • GRANT
    Returning raw genomic data: patient autonomy or legal minefield?
    30 Jun 2020 - 30 Jun 2024
    People funded by this grant:
    • Nielsen J,
    • Otlowski M,
    • McWhirter R,
    • Gill A,
    • Tyrell V
    Project Total: $388,026; This project will seek to answer the following question: Does the Australian legal framework provide sufficient clarity for clinicians, researchers, the public health system and those making requests, to deal with requests for the return of raw genomic sequence data to patients and research participants? It incorporates an interview-based component that will then be used to consider how requests for raw genomic data by patients and medical research participants are likely to be treated from a legal perspective. It will produce a set of recommendations and best practice protocols. Funded by: Medical Research Future Fund - Grant-Genomics Health Futures Mission ELSI scheme ($388,026); University of Tasmania.
  • CONSULTANCY/CONTRACT RESEARCH
    Assessment of Commonwealth, State and Territory legislation and regulations as it applies to the collection and use of health-related genomics information in the clinical and research setting
    20 Nov 2019 - 31 Dec 2020
    People funded by this grant:
    • Nicol D,
    • Chalmers D,
    • Otlowski M,
    • Nielsen J,
    • Eckstein L
    Project Total: $299,424; The purpose of this Project is to undertake an assessment of the relevant Commonwealth, State and Territory legislation and regulations as it applies to the collection and use of health-related genomics information in the clinical and research settings, with a specific focus on current and emerging ethical, legal and social issues. This Project will deliver an evidence-based assessment of the relevant legislation and regulations and how these apply to the current and emerging ethical, legal and social issues identified, including any differences between jurisdictions. This project is intended to provide a high-level overview of the key issues and related legislative environment. It does not include development of recommendations or options to Government. Funded by: Department of Health, Disability and Ageing (Cth) ($299,424); University of Tasmania.
  • GRANT
    Genomic Data Sharing: Issues in Law, Research Ethics and Society
    1 Jan 2018 - 31 Dec 2024
    People funded by this grant:
    • Nicol D,
    • Otlowski M,
    • Critchley C,
    • Eckstein L,
    • Nielsen J
    Project Total: $614,454; Funded by: Australian Research Council - Grant-Discovery Projects ($614,454); University of Tasmania ($10,400).
  • GRANT
    From Discovery to therapy in genetic eye diseases
    1 Jan 2017 - 31 Dec 2021
    People funded by this grant:
    • Mackey D,
    • Craig J,
    • Hewitt A,
    • Burdon K,
    • Jamieson R
    Project Total: $2,498,223; Ophthalmology has always been at the forefront of genetic discovery and this has led to an improved understanding of the biological mechanism of many inherited eye diseases. This CRE brings together leading researchers from all the genetic eye disease groups across Australia to capitalize on the new technologies in ocular imaging and genetic discovery. The research team has a strong track record in identifying and characterising genes that cause both Mendelian and complex blinding eye diseases and in translating these findings into clinical care. Building on our previous experience and using new imaging technology such as optical coherence tomography, adaptive optics and micro-perimetry we will progress research to precisely define the natural history of blinding eye diseases. This is essential for clinical trials to proceed efficiently. Access to a national network of patients and families with specific genetic subtypes of eye diseases will enable us to facilitate and initiate treatment trials for inherited ophthalmic conditions. In conjunction with patient and community organisations we will develop world leading models for genetic risk prediction and for feedback of genetic results for both Mendelian and complex eye diseases. Our work will extend to analyzing health economics as well as the legal and ethical aspects of genetic research. Central to the CRE will be the training of researchers and eye care providers to develop best clinical practice using our research findings. Our team members are experienced participants in international consortia for eye disease gene discovery; Australia's national disease registries and biobanks place us in a key position to also participate in international gene based treatment trials for a large number of disorders. Translation of this research into care for genetic eye disease is predictive, preventive, personalised and participatory. Funded by: National Health & Medical Research CouncilNational Health & Medical Research Council - Grant-Centre of Research Excellence; University of Western Australia; University of Tasmania.
  • GRANT
    Implementation of Genomics into Queensland healthcare: ethical, legal and social implications and policy challenges
    1 Jan 2017 - 1 Jan 2021
    People funded by this grant:
    • Waddell N,
    • Bennett B,
    • Devereux J,
    • McGaughran J,
    • Whiteman D
    Project Total: $218,709; The explosion of genomic technologies offers the promise of revolutionising healthcare, but these new approaches to diagnosing and treating disease bring with them a host of ethical, legal and social and policy complexities. This application brings together a world-class team of scientists, legal experts, ethicists and physicians who will work together to develop protocols and policies within 6 themes: i) community engagement; ii) consent; iii) genomic research; iv) justice; v) clinical use of genomics and vi) health systems. The overall aim of the project is to ensure the safe delivery of genomic medicine for the people of Queensland. Funded by: Queensland Health - Grant-Capability building Workstreams; University of Tasmania.
  • GRANT
    The Australian Legal History Library: Creating historical depth in legal data on AustLII, to improve all legal research
    31 Jul 2012 - 31 Jul 2013
    People funded by this grant:
    • Mowbray A,
    • Greenleaf G,
    • Ford L,
    • Nettelbeck A,
    • Grantham R
    Project Total: $590,000; Funded by: Australian Research Council - Grant-Linkage Infrastructure; University of Tasmania ($11,000).
  • GRANT
    Ensuring the utility and sustainability of tissue banks: Supporting translational research in Australia through informed regulation and community engagement
    1 Jan 2012 - 31 Dec 2014
    People funded by this grant:
    • Kerridge I,
    • Stewart C,
    • Marlton P,
    • Otlowski M,
    • Nicol D
    Project Total: $437,215; Funded by: National Health & Medical Research CouncilNational Health & Medical Research Council - Grant-Project; University of Tasmania.
  • GRANT
    The Age of Personalized Medicine: Regulatory Challenges for Australia
    23 Mar 2011 - 31 Dec 2015
    People funded by this grant:
    • Nicol D,
    • Chalmers D,
    • Otlowski M,
    • Critchley C
    Project Total: $281,000; New genetic technologies create the potential for personalized therapies and direct- to-consumer genetic tests. Changes to clinical trials and increased reliance on biobanks and data linkage by commercial entities are predicted. These developments demand ethical, regulatory and social scrutiny. This project will: create a map of personalized medicine in Australia; identify ethical, regulatory and social challenges; assess benefit sharing and public trust issues; evaluate and make recommendations on regulatory and governance measures needed to ensure best practice and highest ethical standards. This will help create better regulatory and governance environments for facilitating responsible research and clinical service delivery in Australia. Funded by: Australian Research Council - Grant-Discovery Projects ($281,000); University of Tasmania.
  • CONSULTANCY/CONTRACT RESEARCH
    An Information Paper on the Management and Governance of Biobanks in Australia
    1 Jan 2008 - 30 Jun 2009
    People funded by this grant:
    • Otlowski M,
    • Nicol D,
    • Stranger M
    Project Total: $49,090; Funded by: National Health & Medical Research CouncilNational Health & Medical Research Council ($98,180); University of Tasmania.
  • CONSULTANCY/CONTRACT RESEARCH
    Drafting of Human Genetic Testing paper
    1 Jan 2008 - 31 Dec 2008
    People funded by this grant:
    • Otlowski M
    Project Total: $4,564; Funded by: National Health & Medical Research CouncilNational Health & Medical Research Council ($9,128); University of Tasmania.
  • GRANT
    Expand the Capacity of an International Multidisciplinary Research Network Focussed on the Ethical, Legal and Social Implications of Emerging Biotechnologies
    1 Jan 2006 - 31 Dec 2008
    People funded by this grant:
    • Chalmers D,
    • Nicol D,
    • Otlowski M,
    • Skene L,
    • Stranger M
    Project Total: $20,000; Funded by: Australian Research Council - Grant-Linkage International ($20,000); University of Tasmania.
  • GRANT
    Facilitation and Regulation of Research and Development Involving Human Genetic Databanks
    1 Jan 2005 - 31 Dec 2009
    People funded by this grant:
    • Chalmers D,
    • Nicol D,
    • Otlowski M,
    • Skene L
    Project Total: $602,597; Funded by: Australian Research Council - Grant-Discovery Projects ($602,597); University of Tasmania.
  • GRANT
    Developing a Multidisciplinary International Research Network Focussed on Maximizing the Social and Health Benefits to Australia of Human Genetic Technologies
    1 Oct 2003 - 28 Feb 2004
    People funded by this grant:
    • Chalmers D,
    • Otlowski M,
    • Nicol D,
    • Stranger M
    Project Total: $10,000; Funded by: Australian Research Council - Grant-SRI Seed Funding for Research Networks ($10,000); University of Tasmania.
  • GRANT
    Genetic Discrimination in Australia: An Exploration of the Nature and Extent of the Phenomenon Within the Legal and Social Context
    1 Jan 2002 - 31 May 2005
    People funded by this grant:
    • Otlowski M,
    • Taylor S,
    • Barlow-Stewart K
    Project Total: $266,349; Funded by: Australian Research Council - Grant-Discovery Projects ($266,349); University of Tasmania.
  • GRANT
    Legal and Ethical Regulation of the Use and Commercialisation of Human Biological Material
    1 Jan 2002 - 31 Dec 2004
    People funded by this grant:
    • Chalmers D,
    • Nicol D,
    • Skene L,
    • Otlowski M
    Project Total: $364,323; Funded by: Australian Research Council - Grant-Discovery Projects ($364,323); University of Tasmania.
  • GRANT
    Examination of the Application of the Rules of Evidence in Proceedings of Quasi-judicial Tribunals
    1 Jan 2001 - 31 Dec 2004
    People funded by this grant:
    • Henning T,
    • Otlowski M,
    • Blackwood J
    Project Total: $75,000; Funded by: Australian Research Council - Grant-SPIRT ($75,000); University of Tasmania.
  • GRANT
    Legal Standards in the Commercialisation of Human Genetic Technology
    1 Jan 1999 - 31 Dec 2001
    People funded by this grant:
    • Chalmers D,
    • Otlowski M,
    • Skene L
    Project Total: $115,000; Funded by: Australian Research Council - Grant-Large ($115,000); University of Tasmania.
  • GRANT
    Supplementary Funding
    1 Jan 1998 - 31 Dec 1998
    People funded by this grant:
    • Chalmers D,
    • Otlowski M,
    • Skene L
    Project Total: $10,000; Funded by: University of Tasmania - Grant-Supplementary; University of Tasmania ($10,000).
  • GRANT
    Legal and ethical implications of human genetic research: Australian perspectives
    1 Jan 1995 - 31 Dec 1997
    People funded by this grant:
    • Chalmers D,
    • Otlowski M,
    • Skene L
    Project Total: $79,005; Funded by: Australian Research Council - Grant-Large ($79,005); University of Tasmania.
  • GRANT
    Mercy killing cases in the criminal justice system : an evaluation
    1 Jan 1990 - 31 Dec 1990
    People funded by this grant:
    • Otlowski M
    Project Total: $5,000; Funded by: University of Tasmania - Grant-New Staff Research Priming; University of Tasmania ($5,000).