NHS Gene Tests for Sale: Human Genetics Alert Perspective 

Siobhan Harris

Disclosures

February 22, 2019

Editor's Note, 26th July 2019: The Government announced an alternative plan to the original strategy of selling DNA test kits to healthy individuals. Instead, under the  Accelerating Detection of Disease (ADD) challenge, up to 5 million healthy volunteers will be recruited to support research, prevention and treatment of major chronic diseases, including cancer, dementia, heart disease, and mental health conditions. The announcement was part of the green paper, Advancing our health: prevention in the 2020s.

The news that people will be able to pay the NHS to sequence their genes, if they then share their data, has raised concerns in some quarters.

The Health Secretary Matt Hancock announced the move in January predicting it would help build a better understanding of diseases and develop potential life-saving treatments for everyone.

The NHS in England had already announced plans to routinely offer seriously ill children and adults with genetic conditions and cancer, DNA analysis.

This development would allow 'healthy' people to be tested, for a fee, in an attempt to predict their risk of developing certain conditions, like Alzheimer's disease and coronary heart disease, for example.

In return for the tests people would allow their information to be anonymised and shared for research purposes.

The project, to be led by Genomics England is in the development stage, but it has raised some important issues.

Medscape UK spoke to David King, a former molecular biologist and director of Human Genetics Alert, which is an independent, secular watchdog based in London.

The group is not opposed to genetic research but is opposed to some developments, such as genetic discrimination, cloning, and inheritable genetic engineering of human beings.

Q&A

Medscape UK: What do you think of the idea that the NHS intends to sell whole genome sequencing to healthy adults who'll then get a personalised test report.

David King: I think it’s a pretty bad idea. It seems to be motivated by the fact that it will actually generate some income for the NHS. More importantly it would reap a lot of genome sequence data that could be aggregated and sold to the pharmaceutical companies. That seems to be the main motivation, but I think there are many reasons why it's not a good idea for the NHS.

It does allow those who have the ability to pay for the tests a health advantage over those who don't, and that goes against the fundamental principle of the NHS, to be free at the point of delivery and therefore equally accessible to everyone. That is, if you believe the tests themselves are able to deliver any health benefits. I just think it's taking the NHS in the wrong direction.

Medscape UK: Can genetic testing accurately make predictions about risk?

David King: There are some incidences where genetic testing can clearly make good predictions about risk, the most obvious being the clear-cut single gene genetic diseases.

As far as the tests for 'healthy' people are concerned, I think that we are a long way from making accurate predictions about risk given the big influence of environmental factors and the complexity of the interaction between genetic and environmental factors, which will be very individual.

So, I think the consensus at the moment is that these risk predictors should be taken with a pinch of salt. We know that there are lots of scientific studies out there where one group of scientists finds such a mutation creates a percentage risk for a certain condition and then that study is not replicated. We also find if you give the same genome data to different genetic testing companies, in some cases at least, they'll give you a different prediction based on the same data. So, it shows you that these things aren't exactly robust.

Also, the risk is that because the tests come with the authority of high-tech cutting edge science, and also coming from the NHS as a healthcare provider, people will tend to assume that these predictions are real and will worry.

Then they are likely to visit their GP who'll need a lot of knowledge and training to be able to interpret the test results and tell you if, or how much, you should be worried. Even if we can trust the predictions there's not an awful lot you can do, other than what people are told to do generally to improve their health, like eat more vegetables, get more exercise, and so on.

If lots of people start going to their GPs with the printout of their risk report, that's going to take up a lot of time, to very little purpose.

Medscape UK: Will there be implications in terms of genetic counselling?

David King: This is another really big issue. When I started getting interested in this field of genetic testing the consensus was to have genetic counselling before the test, and then after the test another round of genetic counselling to help people interpret the results. With the proliferation of multiple whole genome sequencing companies that ethical consensus has been swept away. People have simply accepted that all of this information is available and we should use it without looking at the ethical needs, and that worries me a lot.

If you want to do it properly you are talking about training a lot of NHS genetic counsellors and their time would certainly eliminate the income that would come to the NHS from selling the tests. It's not ethical to sell someone a test without explaining what the value of the information is and what it isn't.

Medscape UK: Do you think the data will help the NHS?

David King: It has a commercial value as the NHS is likely to sell it on to big pharmaceutical companies. Whether it will ultimately have much value in terms of medical advancement is still very much up in the air.

Since the publication of the first genome sequencing in 2000 there has been a big hype about the whole project of personalised medicine. One has to be quite sceptical of this, based on an understanding of biology. If you forced me to choose between investing the money in personalised medicine and public health research, I'd put it into public health, in that there would be many instances of clear concrete benefits to be gained. I would say that the personalised medicine narrative has an advantage in terms of the way policy makers perceive these things as it's more in line with the general trend of neo liberalism, which is all about targeting things to the individual. In the commercial world it's all about targeted advertisements and I think the personalised medicine narrative fits into that and gives it credibility in the minds of those who make the decisions about where the money is to be spent.

Medscape UK: Are there other potential privacy or genetic discrimination risks?

David King: Although we are told this information will be anonymised there is evidence that has showed that it is possible to de-anonymise without too much effort and identify the person. One would have to very confident, given the sensitivity of the data, that any database couldn't be hacked. At the moment it looks like the hackers are winning the computer security battle.

I'd also worry if lots of people got information, especially about late-onset diseases. Insurance companies are going to think they have a one-sided agreement and the current moratorium between genetic testing and insurance companies may come under threat.

One thing that will come out of people getting their genetic sequence data is they'll find out if they are the carriers of recessive genetic diseases. Then when they come to having children, how do they deal with that information? Are they going to have to start asking partners to have genetic testing so the risk of having a child with a genetic disease is eliminated? I think the risk of people shaping their whole lives around this information is quite worrying.

When you do genetic testing at preconception stage it tends to introduce an element of prophylaxis into the whole thing. Many people would argue that's a good thing but once you create that general consciousness of prophylaxis you can quite quickly get a eugenics climate in society. That does worry me.

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