Karen S. asks (http://www.parkinsons.org.uk/forum/thread/58207) Is everything on the internet reliable information?
It seems that the only thing you will be able to trust on the internet will be your own medical records . . . once the government's sold them on.
The new care.data database brings together everyone's medical records. Mega datasets like this are extremely useful. It's the only way the non-link between MMR vaccine and autism was proved for example. Parkinson's researchers will find the data invaluable, and so PUK has joined with other medical research charities to champion the new scheme (http://www.parkinsons.org.uk/news/13-january-2014/new-opportunity-share-your-health-history )
But there are increasing worries about the privacy of our data, according to doctors and others writing to the Guardian (UK newspaper; http://www.theguardian.com/society/2014/feb/02/nhs-medical-records-care-data ). Far from being anonymised and aggregated, 'the government makes no secret of its intentions to sell whatever data the commercial market wants to buy. The table of HSCIC data linkage and extract service charges 2013/14 includes prices for selling identifiable personal data, specifically a "one-off extract tailored to the customer's requirements of specified data fields containing patient identifiable data, sensitive data items or both". ' says John Veit-Wilson. See it for yourself at http://www.hscic.gov.uk/media/12443/data-linkage-service-charges-2013-2014-updated/pdf/dles_service_charges__2013_14_V10_050913.pdf
There is plenty in my medical record of "sensitive data", my PD status being only one of them. Do I allow anyone who wants to, to buy my personal records for whatever reason they like and damage my chances of employment, of my standing where I live, of my credit rating? Or do I deny researchers the chance to cure PD more quickly?
Or should I not have to make the choice?