Governance of Human Genetic Biobanks and the Interface with (Prospective) Human Genetic Research: Ethical Legal and Regulatory Implications

Overview

The thesis will focus on the governance of DNA biobanks and the interface with the conduct of prospective genetic research. The research will involve an in depth comparative analysis of this interface (drawing on national and international frameworks), with particular interest on the impact of governance of biobanks on prospective genetic research into susceptibility of disease and diagnostic indicators via pharmacogenomics in mental health disorders (such as schizophrenia).

The research will aim to explore the ethical, legal and regulatory implications of human genetic biobanks and will examine:
- Comparative governance frameworks (national and international) of Biobanks used for genetic research in humans.
- Implications for conducting prospective genetic research
- Public trust
- Potential mechanisms for reform (following key recommendations of the ALRC/AHEC Inquiry 2003 – Essentially Yours: The Protection of Human Genetic Information in Australia ).

The research methodology is divided into 2 key components:
(i) Comparative review of documented governance frameworks (national and international) and systematic review of published literature on emerging ethical, legal and regulatory issues.
(ii) Empirical Analysis:
- Case Studies and Survey(s) of Biobank Practices & Prospective Genetic Research Protocols.
- DNA related Biobank Collections (National and International) - Population and Disease Specific accessed for medical research
- Prospective / Longitudinal Research Protocol(s) (with particular attention to pharmacogenomics and mental health research)
- Attitudes of donors toward tissue donation and willingness to participate in genetic research.

OPPE Staff

Jennifer Fleming and Wayne Hall (Principal Supervisor)

Collaborators

John MacMillan, Queensland Clinical Genetics Service, Royal Brisbane Hospital (Co-supervisor)
David Weisbrot, Australian Law Reform Commission (Advisor)

Status

In progress

Outcomes

Jennifer’ PhD. Peer review publications and a Book Chapter will also be produced.

Funding

IMB PhD Research Scholarship

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Last updated: 16 September 2004