Posts by Milo1970 16 publicly visible posts • joined 11 Oct 2021
The arguments against data sharing appear to be fear-based - explicitly, around the fear that data will be sold and abused.
On the other hand, the argument in this article appear to be based on the clear benefits to everyone who will experience ill-health of sharing data.
You cannot selectively invoke a 'fear-argument trope' if you are using a fear argument yourself.
This is incorrect. You are conflating traditional randomised controlled trials on small populations - n=20 for a typical phase II trial - with mass population studies of, say, the effects of metformin on a mass population in regard to its effects on reducing the prevalence of a range of cancers. The first doesn’t and can’t replace the second. They are very different things.
It is very very hard to recruit eligible patients with rare diseases who fall within the inclusion criteria of any specific trial who are sufficiently close to the research centre. But this piece us not about data as a replacement to RCT trials - it is a whole different paradigm.
I feel the harms suggested are hypothetical.
1. A risk that an employer may know of your disease profile, or the hypothetical genetic risk you may get a disease and not employ you is unlikely. This would be subsumed by many real-world realities. For example, women of child bearing age are given jobs despite the fact they may fall pregnant on the company clock.
2. The majority of the working population has (in aggregate) a chronic disease and/or mental health issues. At least a third of us will die of cancer. More will contract it and survive it with treatment. If we don't get cancer in work time the chances are we will get something else, before we retire. Employers, whether they know an individual's risk profile or not, must deal with the reality that health problems are common. Further, we all have genetic dispositions to develop certain diseases given sufficient time and environmental triggers. It feels unlikely that a prospective employer will fish out the theoretically healthy option (assuming they know the health profile of everyone) given that so many of us will get ill at some point. Who are the genuinely healthy safe bets?
3. The above is therefore priced into the labour market and employee risk profile.
4. Speaking personally - not therefore strictly logically (arguing from the particular to the general which is at best inductive logic) - I have T1 diabetes and a rare cancer. I have always been explicit about these before accepting a job and I have never been turned down for a job.
I believe, therefore, that the risks commentators are supposing are theoretical and are outweighed by the real, obvious, tangible and concrete benefits of anonymised data sharing.
I agree. The dangers, such as they are, are hugely overwhelmed and rendered irrelevant by the huge gains and advances at stake for humanity. I have not heard anyone yet articulate a clear and tangible risk to an individual from a data breach. While I am sure those risks are real, I would then want a clear weighing up of those risks against the massive benefits available to release of medical data that can track age, co-morbidities, extant drug interventions etc that will be available to researchers as a result of this data share. In moral terms this is a slam-dunk utilitarian argument. Condemn millions to offer a nominal protection of the individual from a non-specific low risk.
If you actively consent (and it is possible to actively consent even within the aegis of 'assumed' consent) because you see a personal benefit or a benefit to the commonwealth then it is less a matter of losing control, rather actively taking control. It is perhaps like stepping on an aircraft. One makes an active decision to handover control in one's personal interest. That is, in itself, a controlled decision.
The trials of which you speak (RCTs) which study very small amounts of people are very different from mass data research in a generalised population.
RCTs to develop new treatments cost millions and then to bring new drugs to market from those trials cost billions (typically). Universities cannot afford to run such trials and big pharma is not going to gamble on them for anything other than close to dead certs. Rare diseases don't get a look in.
A mass data analysis is quick, cheap, focussed and doesn't put patients at risk by exposing them either to untested drugs or denying them those potentially life-saving drugs (at the efficacy stage - Phase IIa/b and Phase II of the trial process) if they are on the placebo wing of the trial. This is not comparing like with like. Data research for mass disease is a totally different paradigm.
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