Who else is regulating what biobanks can do?
The Australian Government regulates research done through biobanks using Human Research Ethics Committees (HRECs).
These committees protect the rights and welfare of participants in research by reviewing proposed research and assessing it against a national standard, the National Statement on Ethical Conduct in Human Research, to make sure it is ethically acceptable. With HREC approval, data collected by a biobank can be used multiple times for multiple research projects.
HRECs are usually established by research organisations and must consist of no less than eight members with specific qualifications and expertise. HRECs must report every year to the National Health and Medical Research Council (http://www.nhmrc.gov.au/health-ethics) to ensure their operation is consistent with national guidelines and laws.
This supervision is important because the disclosure or misuse of samples and other health information may cause distress or place individuals at risk of discrimination or stigmatisation.
All universities, hospitals and research organisations have agreed that any research conducted by or for them involving humans must comply with guidelines listed in the National Statement.
Who is actually paying for the biobank?
A publicly owned biobank would be funded by money raised from taxpayers by the government.
Not all biobanks are publically funded. Biobanks can be expensive to set up and maintain. Some are publicly funded (e.g. UK Biobank), some are privately funded (e.g. Mayo Clinic Biobank), and some are funded through public-private partnerships (e.g. deCODE genetics).
Certain types of funding promote different types of reporting as well as who should govern the biobank. It might be expected that a publicly funded biobank would have greater transparency and reporting obligations because it uses taxpayer's money. The public would be kept in the loop with the goings on of the biobank, and require that the biobank have a clear system of governance.