Beijing Genomics Institute
Shenzhen, 27–30 April 2009
Genomic research into disease susceptibility and treatability relies on large numbers of biological samples and associated data (donor’s medical history, age, sex, ethnic background, etc.). This raises a number of issues of ethical governance including confidentiality, traceability, informed consent and benefit-sharing. The fourth and final BIONET workshop was held in Shenzhen from 27 to 30 April 2009 on the topic of “Biobanks and genomic research”, hosted by the Beijing Genomics Institute – Shenzhen. Around 60 scientists, social scientists, ethicists and clinicians from Europe and China gathered in Shenzhen for a workshop on the ethics of genomic research and biobanking. Speakers discussed ways to establish best practice to ensure biological sample donors’ informed consent, quality control of samples when collected and good storage practices of the samples as well as way to protect privacy of personal information on electronic databases.
“In the future, genomic studies will require many more biological samples and this raises a number of ethical challenges. It is only through international collaboration that we can, not only work more efficiently, but also address ethical issues more effectively,” said workshop host Dr. Yang Huanming from the Beijing Genomics Institute – Shenzhen.
One of the key tasks of BIONET, which is financed by the European Commission’s Sixth Framework Programme with support from the United Kingdom’s Medical Research Council (MRC), is to examine how international collaboration between Chinese and European life scientists should be ethically monitored when there are different legal frameworks, ethical norms and cultural understandings involved.
“With biobanking, we have the opportunity to organise issues of ethical governance while this new technology is developing, rather than after”, said Dr. Ole Doering, BIONET partner and co-organiser of the Shenzhen workshop.