NHS England and the Health and Social Care Information Centre are casting around for good examples of the kind of research that might be supported by care.data, to persuade the public it is a good thing.
Judging from the arguments being put forward by supportive columnists and interviewees, they have decided on the positive and negative links between Thalidomide and birth defects, smoking and cancer, and MMR and autism.
Dr Clare Gerada, the hugely respected head of the Royal College of General Practitioners, was just on the Today programme using the first example as a reason for people to sign up (or not opt out, although the programme didn’t really get into that).
Thalidomide feels like a terrible case to pick. Sure, Germany picked up the problem because it had the population data to do so. But the proponents of care.data might not want too many questions asked about why that was the case.
Added to which, the Thalidomide scandal was at heart a testing and regulatory scandal. The companies behind it did not test all aspects of the drug or carry out the animal tests that should have shown up its impact on pregnancy.
The chief pharmacist of the FDA in the US won her country’s highest civilian honour for saving her country from the worst of the problems seen in Europe by pointing this out and refusing to licence the drug for sale in the face of huge pressure from its backers.
By picking Thalidomide, care.data’s proponents are coming perilously close to suggesting that we need it so we can spot the lies of big business and the failures of regulators.
Actually, that might turn out to be one of its uses. But more open testing and proper vigilence feel like better ways forward. When it comes to making the case for care.data, its supporters need a better example than this.