Predicting intention to biobank: a national survey.

Background: The success of human population biobanks are dependent on the publics' willingness to participate. This research aimed to determine those factors important in determining the public's intention to donate a biological sample to a publicly funded biobank, and allow that sample to be linked with medical records.

Methods: A national sample of 1000 Australians was surveyed via telephonic interviews.

Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing.

Purpose: To undertake a systematic process of verification of consumer accounts of alleged genetic discrimination.

Methods: Verification of incidents reported in life insurance and other contexts that met the criteria of genetic discrimination, and the impact of fear of such treatment, was determined, with consent, through interview, document analysis and where appropriate, direct contact with the third party involved. The process comprised obtaining evidence that the alleged incident was accurately reported and determining whether the decision or action seemed to be justifiable and/or ethical.

Investigating genetic discrimination in the Australian life insurance sector: the use of genetic test results in underwriting, 1999-2003.

A major component of the Genetic Discrimination Project (GDP), an Australia-wide study to examine the advantages and disadvantages for individuals of having genetic information and cases of alleged genetic discrimination, is the analysis of insurers' use of genetic test results. The peak life insurance body, IFSA, had collected data through the Australian Institute of Actuaries (AIA) for the period June 1999-May 2003 from life insurance companies in Australia regarding their use of genetic test results in insurance underwriting. The GDP negotiated with IFSA and the AIA for access to this data for independent analysis.

Methodological considerations in the study of genetic discrimination.

The potential significance and dimensions of genetic discrimination have been described extensively in published literature, but epidemiological and verified case data are limited. Obtaining unbiased data from individuals about discrimination which has been based on erroneous or unjustifiable assumptions about their genetic predispositions poses unique challenges. Through review and discussion of research literature, we identify methodological considerations for collecting valid epidemiological data on genetic discrimination from individuals in the community; in particular, we consider issues which relate to sampling, selection and response.

Investigating genetic discrimination in Australia: opportunities and challenges in the early stages.

Genetic discrimination, defined as the differential treatment of individuals or their relatives on the basis of actual or presumed genetic differences, is an emerging issue of interest in academic, clinical, social and legal contexts. While its potential significance has been discussed widely, verified empirical data are scarce. Genetic discrimination is a complex phenomenon to describe and investigate, as evidenced by the recent Australian Law Reform Commission inquiry in Australia.