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ANONYMITY & RESEARCH
By D’Arcy Holman
A$45.00 123 pages
This book is self-published with the support of The University of Western Australia.
All proceeds are donated to encourage the professional development of students of public health in the spheres of law, ethics and community participation.
In Anonymity and Research, D’Arcy Holman explains and critically examines health data and biospecimen law in Australia relevant to health research, including the development of data linkage systems, biobanks and other initiatives in integrated health information.
The book sets out the rights, duties and protections concerning health subject matter that arise in strict common law, equity and statute, including authorities from the United Kingdom and other common law jurisdictions that could have persuasive value.
It proceeds to a legal analysis of the effects of anonymisation on each of the legal constraints, including commentary on international variations. The aim is to reveal the state of Australian law that applies to health data and biospecimens both before and after a process of anonymisation.
This book offers conclusions on the legality of the use of personally identifiable and anonymous health data and biospecimens in Australian research, together with a discussion of the roles of information governance, technology and law reform in optimising fair outcomes and resolving areas of contention.
The highly readable text is supported by finer detail in footnotes with extensive citation of legal authorities. Anyone associated with the development of data linkage systems and biobanks will find the book rich in reference materials, which are readily accessible via a subject index and separate tables of cases, statutes and journal references.
Anonymity and Research will prove invaluable to health researchers, law academics and ethicists, and information custodians and administrators who have an interest in human research that relies on access to health data or biospecimens.
As a graduate in law and medicine with background senior leadership roles in the academic, government, community and private sectors, Winthrop Professor D’Arcy Holman is uniquely placed to write this book. As foundation Chair in Public Health at The University of Western Australia, he has published over 450 academic works and led the creation of the world class WA Data Linkage System during the first 12 years of its history. His interests in law arose through experience in statutory administration and law reform agendas over many years. At the completion of his formal law studies he received the Francis Burt Chambers Law Medal for the most outstanding graduate of the Murdoch University Law School. He is a recipient of the Sydney Sax Public Health Medal for contributions to the health of the Australian nation. He is also a recipient of the Health Consumers Council of WA Service to Consumers Award and he presently chairs the UWA Animal Ethics Committee.