Biobanks and Biomedical Data Sharing

Biobanks are large collections of human biological tissue specimens. The use of biobanks for medical research promises faster discoveries, for better diagnostic tests and more personalised treatment options. However, biobanks come with many ethical challenges, and complex social and cultural implications.

This aspect of DSP research consists of several projects with different collaborators. In addition to biobanks, a related focus concerns the ethical, legal, social implications (ELSI) of data sharing in large scale genetic and genomic studies. Increasingly, there are pressures on scientists conducting genetic research to share their data, which is then made available to other scientists via electronic platforms. However, the implications of these practices for research participants are not clear. How do they feel about this? What are the implications for privacy and insurance? Could law enforcement or immigration agencies gain access to these data?

For a public deliberation project on biobanks conducted with collaborators in British Columbia see http://biobanktalk.ca/.