Privacy and biobank research: weighing private and public interests
- Journal of Law, Information and Science
Author/s: -Chalmers, Don
Journal: Journal of Law, Information and Science
Research efforts in the computer industry, in general, and bio-informatics, in particular have concentrated on developing specific privacy enhancement technologies (PETs) to protect personal privacy, prevent unauthorised access to this information and, most importantly, to enable authorised access to information. In the 1970s and 1980s, the informatics era was accompanied by public concerns about telecommunications and the security of personal information held by governments, banks and other credit organisations. These concerns were to the forefront in the introduction of the Commonwealth Privacy Act in 1988.
By the 1990s, privacy concerns extended to electronic record linkage of personal health information in general and genetic information in particular. Developments in bio-informatics have facilitated the linkage of personal information with individual health records. The protection of privacy of genetic information was the driver behind the joint Australian Law Reform Commission and Australian Health Ethics Committee Report, Essentially Yours that examined protection of personal genetic information privacy in genetic testing, health service delivery, insurance, employment, law enforcement and parentage testing. Genetic research has aroused specific concerns centred on privacy. The modern ‘genome era’ has seen a rise in community concerns about the potential for personal genetic information to be disclosed to others, such as insurance companies or employers, to the detriment of not only the research participant but also the family members that share the participant’s genetic profile.
A significant feature of the genome era is the creation and use of massive genetic data sets, of which the sequencing of the DNA of the human genome, published in 2001 is an example. The scientific effort has moved from sequencing to translating these massive genetic data into a new generation of diagnostic and therapeutic products. These data sets and the equally massive tests and analyses that create them are computer automated. These data are banked, hence the neologism, ‘biobanks’ and are rich resources for gene studies. With data-linkage biobanks provide myriad research opportunities. Data-linkage is enabling researchers to conduct research, in a manner inconceivable as little as a decade ago. Researchers are involved in data-linkage for population health research and epidemiological studies within national and international collaborations. Clearly, data linkage arouses concerns about privacy and the ethical motivation and conduct of such work.
This article examines privacy in the light of the development of biobanks and cross-border collaborations. Biobanks will facilitate genomic research but this must be balanced with the protection of the welfare and privacy of the biobank sample contributors.
Unsurprisingly, the regulation of biobanking has, or is being considered in a number of countries by a range of research or regulatory organisations.