Report on personalised healthcare seeks more regulation

12 October 2010

The Nuffield Council on Bioethics has released a new report on personalised healthcare, calling for more action from the UK Government to help people use online health information and services safely and effectively.
The new report was informed by a major external consultation about issues including whether direct-to-consumer services such as genetic testing or body imaging were scientifically sound and if greater regulation was required (see PHG Foundation response). The working party behind the report sought to weigh up the benefits of information and personal freedom against potential harms
They report finds that online health services are convenient, they could ‘mislead, confuse or create unnecessary anxiety’ for users, and called for action to ensure that people were aware of the limitations – for example, of DNA profiling to accurately predict disease risk. One of the report authors noted: “People should be aware that other than prompting obvious healthy lifestyle choices…the tests are unlikely to inform them of any specific disease risks that can be significantly changed by their behaviour”.
Calls are made for more regulation, including the necessity for to provide evidence in support of their claims about tests and services, and an accreditation scheme for online health record providers. This would set standards for use, storage and confidentiality of personal information. One sensible measure proposed is that websites offering health information and advice should ‘state where the information originates and what it is based upon, who wrote it, and how the author or organisation is funded’, and make advertisements clearly distinguishable from other information.
However, increased regulation as suggested may prove impractical while the UK Government is actively reducing the number of regulators and oversight bodies, to make savings and improve efficiency. Meanwhile, a cautious approach for users remains advisable; whilst they are relatively unlikely to be harmed by the services on offer, the expenses may well outweigh the health benefits.

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