The United Kingdom's public healthcare system has a long history of using its cradle-to-grave records to advance research, with the dangers of thalidomide and safety of the MMR vaccine both being shown by the data. Now, the government plans to digitize its health record treasure trove and sell access to biopharma companies.
Plans to create a database of healthcare records and share it with private companies date back to at least 2011, when the government suggested it as a way to make Britain a life science powerhouse. The centralized nature of the National Health Service means one, admittedly sprawling, organization has access to the records of the 52 million people in England. By digitizing these records and selling access to biopharma companies, the government thinks it can tap into its scale to help accelerate research.
|Mark Davies, HSCIC public assurance director--Courtesy HSCIC|
Records will be uploaded to the Health and Social Care Information Centre (HSCIC), a database that is expected to go live later this year. Academics and drug and insurance companies will then be able to apply to access the data. If the submission is accepted, the applicant will receive "pseudonymized" records in exchange for a fee. This has caused some consternation among privacy experts. While the data will be stripped of some personal identifiers, there are no guarantees of total anonymity.
"You may be able to identify people if you had a lot of data. It depends on how people will use the data once they have it. But I think it is a small, theoretical risk," Mark Davies, HSCIC's public assurance director, told The Guardian. A common fear is that insurance companies or employers will gain access to data that identifies people with mental health conditions and diseases such as cancer, as well as revealing their smoking and drinking habits. The potential for discrimination is clear.
Similar issues have been raised by the U.K. government-backed 100K Genome Project and its private-sector equivalent, the Personal Genome Project. The 100K Genome Project will potentially make U.K. health records even more valuable to researchers by linking genetic data to disease histories, but it too has attracted criticism.
- read the Guardian article