Biobanks of human biological materials and data are increasingly being linked together in networks that seek to maximise their capacity to identify causes of and treatments for disease, in order to benefit medical research, clinical medicine and public health. These biobank networks raise considerable ethical, legal and socio-cultural concerns about control and custodianship, benefit sharing, exploitation of vulnerable groups, and fulfilling cultural obligations. These concerns are magnified and increase in complexity as biobanks network across international borders.
We will present findings of a national research project analysing the ethical, legal and social issues raised by biobank networks and the challenge of globalisation. This included a survey of the perspectives and practices of Australian biobanks with respect to networking and globalisation, a survey of the Australian public to assess their attitudes to participation in global biobanks and networks, as well as qualitative interviews with both stakeholder groups. Empirical work was complemented by conceptual analysis incorporating globalisation theory, and detailed consideration of ethical concepts such as trust.
This presentation will synthesise the study results and offer several recommendations for policy and practice in global biobanking.