Tuesday 6 December 2011

The Price of Patient Privacy

Guest post by Georgia Hussey

Yesterday’s announcement that NHS patients’ data is to be opened up to aid potentially life-saving research seems, initially, to be a fair one. Excluding external factors, such as potential leaks of information, deliberating between patient privacy and the advancements that could be made with patients’ data seems weigh considerably on the side of the potential benefits of the research. Moral philosophy tells us that when presented with an ethical dilemma between two things, the right choice is the one that does the least harm and the most good. So long as anonymity is guaranteed (and the fact that perhaps it can’t is another issue), the potential harm to patients is far outweighed by the benefit of the availability of such information. With an opt-out system resembling the successful organ donor policy held by countries such as Spain (where there are 33 inhabitants in a million are organ donors, compared with 14.1 in the UK), the change can be justified in a similar way; its likely that most people would be happy for data to be used, just as 90% of us support organ donation. The consequences of this decision would indeed be positive: greater medical innovation, encouraging research and facilitating the fight against diseases.

However moral philosophy also tells us that the consequences of an action alone aren’t enough to make it morally right, it must also be motivated by the right reasons. The context of this announcement is therefore crucial: it’s hard not to consider this another move in the right’s creep towards NHS privatisation.

After the controversy that has surrounded the government’s policy on the NHS, hearing David Cameron and Andrew Lansley utter the words ‘private firms’ and ‘NHS’ in the same sentence triggers scepticism. Lansley’s Health and Social Care Bill has faced significant opposition, with many criticising the speed with which it’s been pushed through parliament, as well as the far-reaching implications it will have for our country’s health service. Lansley dismissed claims that the bill will be a major step towards the privatisation of the NHS as “ludicrously scaremongering”, but a document that emerged two weeks ago seemed to also point in this direction. Medical professionals said the implications of the document -a report on ‘Developing Commissioning Support: Towards Services Excellence’- which was sent out to various health organisations, would inevitably be that large sections of the health service would be overpowered by private providers. GP commissioning groups would eventually have to hand over responsibility for some services to private companies, unable to compete with them without support.

The further changes to the NHS announced yesterday seem more worrying within this context. In his speech on life sciences yesterday, David Cameron detailed his plan to open up the NHS to pharmaceutical companies for clinical trials as an effort to foster a closer relationship between the industry and the NHS. With a brief reference to the patients that could be helped, Cameron’s speech centred on the life sciences as “a jewel in the crown of our economy” with the NHS as the convenient cloth to polish it with before the auction. The focus on the economics of the decision exposes where the true interest of the government lies in opening up the NHS. Andy Burnham has rightly warned of the need to “tread carefully” on this issue. Rather than showing themselves as making an altruistic move to encourage medical research, the announcement is the Conservative party’s inability to forgo a chance to twist the NHS into turning a profit.

So although the consequences of using the NHS as a resource for medical research and clinical trials are likely to be mostly positive, the government’s motivation for doing so is cause for concern. Perhaps David Cameron has deliberated about the ethical dimensions of the dilemma, and reasoned that the potential risk to patient privacy is worth the good that will result. But if his motivation is actually based on a “calculation about what’s best for our economy” we do indeed need to tread carefully; if the motivation that lies behind the decision is economic, then David Cameron has sold patient privacy for another jewel to go in his crown.

1 comment:

jake galea said...

Free health care at the point of sale is surely one of the most fantastic, worldly ideas. Pharmecutical companies are the very opposite; the exploits of Monsanto, GSK, Pfizer etc, range from the shady to the horrifying. The NHS may be flawed but its ideals are worth preserving, let's not throw the baby out with the bath water