Workshop on genomics, health records, database linkage and privacy

On 22 February 2012 the Council held an exploratory workshop which bought together Council Members, staff and invited experts to discuss the ethical issues raised by genomics, health records, database linkage and privacy.

This topic was identified at the 2011 Forward Look meeting and the workshop was held to help members decide whether the issue merits further examination by the Council. The workshop opened with presentations on the following subjects:

• Privacy in a global networked world

• Biobanks - current opportunities and threats

• Health records - current opportunities and threats

• Genomics - current opportunities and threats

The presentations were followed by a discussion session on these key themes:

• Consent and control of personal biodata by individuals

• Authorisation to access, share and link personal biodata without the consent of a person to whom the data relate

• Anonymisation, data security and privacy protection

• Feedback of information and the ongoing relationship between controllers and subjects of biodata

Following the workshop, Council Members will decide whether to take this forward as a project for the future.

• Download the note of the workshop (PDF 520 KB).

• Download the background paper on genomics, health records, database linkage and privacy from the 2011 Forward Look meeting (PDF 230KB).