One of the ways in which a district hospital differs from a large foundation trust in the NHS is that you’re more likely to take part in a drug trial or research in the large foundation trust.

Currently, European law is having to negotiate the ‘data protection’ directive.

Under EU law, personal data can only be gathered legally under strict conditions, for a legitimate purpose.

Furthermore, persons or organisations which collect and manage your personal information must protect it from misuse and must respect certain rights of the data owners which are guaranteed by EU law.

The needs of data sharing, for example by GPs and hospitals in future of the NHS, will be different from the needs of the academic research community, and somehow this will need ultimately to be reflected in our law.

The Equality Act 2010 in England and Wales is currently the key piece of legislation which allows claims of discrimination to be brought.

It bought together a number of existing laws into one place so that it is easier to use. It sets out the personal characteristics that are protected by the law and the behaviour that is unlawful. Under the Act people are not allowed to discriminate, harass or victimise another person because they have any of the protected characteristics.

Everyone in Britain is protected by the Act. The “protected characteristics” under the Act include age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion and belief, sex, and sexual orientation

When US sneezes, England catches a cold, it is alleged.

It is claimed that that many Americans fear that participating in research or undergoing genetic testing will lead to them being discriminated against based on their genetics.

Such fears may dissuade patients from volunteering to participate in the research necessary for the development of new tests, therapies and cures, or refusing genomics-based clinical tests.

To address this specific problem, in 2008 the Genetic Information Nondiscrimination Act (“GINA”) was passed into US law, prohibiting discrimination in the workplace and by health insurance issuers. One wonders whether a genetic phenotype should be considered one day for an amendment in the Equality Act for overseeing such claims under discrimination law.

GINA prohibits issuers of health insurance from discrimination on the basis of the genetic information of enrollees. Specifically, health insurance issuers may not use genetic information to make eligibility, coverage, underwriting or premium-setting decisions.

Furthermore, issuers may not request or require individuals or their family members to undergo genetic testing or to provide genetic information.

As defined in their law, genetic information includes family medical history and information regarding individuals’ and family members’ genetic tests.

But why does this suddenly matter for “Our NHS”?  The main reason is that there is a massive ‘data sharing’ drive in the UK.

There are in fact many emerging scenarios, where the empowerment of rights for patients can in fact run alongside potential apparent reasons for detriment.

Tim Kelsey, NHS England’s National Director for Patients and Information, wrote this week for NHS England:

“Transparency saves lives and it is a basic human right yet transparency, unlike heart surgery, is not mainstream in our health and care services. Last year, I took a vision to the EHI Live conference (held this week in Birmingham) to make transparency the operating principle of the new NHS. Data sharing between professionals, patients and citizens is the precondition for a modern, sustainable public service: how can we put patient outcomes at the heart of healthcare, if we cannot measure them? How can we help clinicians maximise the effectiveness of their resources, if they do not know where they are spent? How can we ensure the NHS remains at the cutting edge of statistical and medical science if we do not allow researchers and entrepreneurs safe access to clinical data?”

It is conceivable that ‘integration’ of the NHS and private insurance systems could be a feature of this future, as even this contributor to “Your Britain” observed.

MPs may wish to argue that citizens also need adequate protection, sometimes, from data sharing. This would, for example, be necessary if ever the ill-fated universal credit is integrated with health and social care personal budgets.

Currently, GINA prevents employers from using genetic information in employment decisions such as hiring, firing, promotions, pay, and job assignments.

Furthermore, GINA prohibits employers (for example, employment agencies, labour organisations, and apprenticeship programs) from requiring or requesting genetic information and/or genetic tests as a condition of employment.

It has been argued elsewhere that Beethoven might have been examples of individuals whom, if they had been tested for serious genetic conditions at the start of their careers, may have been denied employment in the fields in which they later came to excel. The jurisprudence for this issue is full of subtleties, which are discussed well in this well known blog on human rights law.

A ‘corporate capture’ of information held in the NHS has already begun, some might say. It is important that the legislature gets on top of this problem before it gets out-of-hand.