UK docs fight plans to hand over personal health information
This isn’t a research ethics story per se, but it’s clearly relevant.
From The Daily Telegraph: Doctors fight plans to hand medical records to researchers and private companies
The [British Medical] association said the Government was “dancing with the devil” with its proposals to give researchers, which could include commercial organisations, access to a giant computer database of patient records.
The Government’s own health information watchdog has also written to ministers to express his concern about the plans, which could see patients’ names and addresses handed over.
Medical researchers claim being given access to the new database would make it easier to carry out studies.
The move being proposed amounts to a decision, on the part of the UK government, to consent to a wide range of research on behalf of its citizens, apparently removing the need for individual consent – in fact, the article refers to “removing the right to consent” which sounds much more purposeful than simply neglecting to acknowledge that consent for sharing of this kind of information might be a good idea. The researchers are certainly right: It would make it easier to carry out studies; however, with the removal of the right to consent, it would be done at the expense of privacy and choice of individuals as well as public trust.
It is difficult to decide what is most worrisome about this proposal. A few obvious things come to mind at first glance.
This story illustrates one of the standard worries about databases: Information gathered for one purpose (e.g., quality-control for a government-funded programme) may end up getting used for a purpose (e.g., research on who-knows-what) that may not have been anticipated when the database was originally set up. Another obvious worry is that persons or, in this case, organisations, may be able to access private information about you without your consent. Finally, this isn’t just about health care researchers having access to identifiable personal information to conduct research on whatever they wish. According to the article, the database would also be made available to pharmaceutical firms and companies that sell health products, who would then quite easily be able to target their products and services to persons with identified diagnoses.
While we often gripe about the privacy legislation in Canada, it does work to address and restrict this kind of activity and in doing so, protects individuals and helps to foster public trust in the institutions that hold private information about us. Sounds good, right about now.