The Saatchi Bill, citizen science and the debate on extended research

Steve Fuller, sociologist and philosopher of science, recently tweeted that:

It says something about the ideological limits of ‘citizen science’ that @SaatchiBill doesn’t seem to be within the concept’s remit.

What is the relationship, if any, between the Saatchi Bill and citizen science?

The UK Medical Innovation Bill, known as “Saatchi bill” from the name of its proponent, would have substantially deregulated medical experimentation in terminally ill patients, amending medical litigation laws requiring clinicians to stick to best practices. The bill was never discussed at the House of Commons as the LibDem, back then the junior party in the Tory-LibDem coalition, retracted their support.

Lord Maurice Saatchi, advertising guru of Saatchi & Saatchi, had been campaigning for the bill since his wife died of cancer. Saatchi claims that the life of terminally ill patients is wasted if experimentation is not permitted outside of clinical trials. It is wasted because non standard treatments may offer hopes to patients that are currently considered hopeless. Moreover, it is wasted because experimentation may accelerate medical innovation by scaling up the search for new protocols and compounds to every single patient who consent to non-standard treatment. Saatchi, explaining the rationale of the bill, said: “Innovation is deviation so non-deviation is non-innovation, as simple as that”.

The Bill enjoyed support from a variety of publics, patient organizations and medical professionals. It also drew harsh criticism, notably from a Lancet editorial:

The Medical Innovation Bill strikes at the heart of evidence-based medicine. […] To pretend that the alternative [to Evidence based medicine] is the provision of untested evidence on one or two individuals’ potentially biased judgement is not only disingenuous, it is harmful. Evidence-based medicine is a pragmatic approach to an emotive topic that aims to balance advances in medicine with an appropriate degree of caution.

Anne Williams and Peter Oborne (journalists) claimed that the bill would only favour big pharma, insurance companies and “quacks”:

Pharmaceutical companies stand to profit greatly. They are always looking to expand the market for existing drugs […]. “Innovative” use […] is much cheaper and faster than developing new drugs. […] Providers of private health insurance will benefit. If you can afford the premiums, you can jump the queue, as the NHS comes under relentless pressure to provide risky, inappropriate, or useless treatments at enormous cost. […] Quacks will be given free rein. No “treatment” is so loopy (or potentially dangerous) that the Saatchi Bill won’t protect doctors who prescribe or administer it from prosecution.

This is an important debate. Imaginaries of big-data and self-experimentation, including forms of citizen science, are conducive of an ideal of extended biomedical research. Extended biomedical research is research that happens beyond legally mandated settings (e.g. trials) and even beyond clinical settings, e.g. at home. Powerful anti-paternalist arguments support self-experimentation. Equally powerful technological imaginaries support the idea that no data about any single patient should be wasted. However, deregulated extended research may bring substantial risks to the public and be eventually adopted on the basis of corporate interests, rather than social beneficence. The debate may moreover overlap with patterns of professional and disciplinary warfare. These are the sticking points of the debate on the Saatchi bill. We have already dedicated the previous post to such sticking points

Steve Fuller is right. The debate on citizen science would be ideologically limited if it did not engage further with these sticking points.

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