A view about the health secretary’s announcement on healthy volunteers and DNA tests

Quite a few of Saturday’s papers covered the health secretary’s announcement that he wants the NHS to offer healthy ‘volunteers’ the option of paying to have their DNA analysed.

The goal is to recruit 5 million volunteers resulting in masses of data which can be used by researchers to further understanding and develop new treatments.

It sounded typically ambitious and over-excitable by Matt Hancock. In fact I wondered whether it was a bit premature to put it mildly. No further information seemed available on the Genomics England website elsewhere. Could I hear much scurrying by panicked officials in the background, I wondered?

Inadvertently or not the media stories seemed to underline why Mr Hancock might need to rein it in a bit. Most of if not all of those quoted in the stories – senior docs, ethicists and others – couched their comments carefully and with significant health warnings.

My only disappointment was the lack of a patient group or charitable voice to back this up. Whatever happened to our charity sector’s willingness to cast a critical eye over such pronouncements and call a spade a spade?

From the potentially iniquitous consequences of introducing a paid-for service like this, to the issues raised for our health system, and above all – above all – what it could mean for people and their families in terms of raised expectations or life-changing information, we are a long way off from realising this plan in a responsible way.

Only recently the Government and Genomics England have understandably and rightly heralded the fact that it has reached its goal of collecting 100,000 samples. But don’t be fooled – it has not been easy. As I am sure they would admit. Which is why we need to take its lessons seriously. After all, aren’t we all talking about ‘learning health systems’ these days?

Local NHS implementation of the 100K Genome Project through its 13 centres has not been easy. The commitment to patient and public engagement at local level was not always backed up with good resource. Health professionals needed help and support to feel confident about having a conversation with patients.   Access to genetic counsellors and other help and support for patients is essential. The conversation with a family where just being able to put a name to their child’s rare condition feels like a breakthrough, is different from the conversation with an adult with cancer for whom the results of a DNA test may have little or no immediate benefits. It will be different again with a healthy volunteer who has their whole life ahead of them.

In the context of the debate about scaling up DNA testing I thought this conclusion from a survey of the Belgian population about DNA testing put the issue well:

‘Paying due attention to the attitudes, beliefs, and concerns of the general public is important to ensure ethically sound and socially acceptable implementation of new genetic technologies.

As the Chief Medical Officer herself said in her 2016 annual report (which interesting talks about the need for ‘parity of access’):

‘We need to continue and strengthen an open dialogue and make sure that the argument for joining in is heard. To achieve this we need to maintain patients’ and the public’s trust and make genomics everyone’s business.’

So C’mon Matt, let’s be frank.

Unless you want to be known as ‘half-cock’ Hancock or intend to impose this by martial law, we need to think this through carefully and that process begins by talking responsibly about our ambitions.

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