If you’re that way inclined, and lucky, you might revel in unwrapping a home DNA testing kit this Christmas. 

Some promise to provide information on your ancestry and genetic heritage; some offer insight they say can help you to tailor your diet; others say they will let you know about the chances of contracting diseases like certain cancers or whether you have a predisposition to dementia.

The idea is that such knowledge will allow you to adapt your lifestyle to reduce the risks of developing those illnesses.

Download the new Independent Premium app

Sharing the full story, not just the headlines

Access to that kind of information could be literally life-changing, and there’s a certain amount of (perhaps narcissistic) curiosity that makes these kits very tempting.

So when I was offered the chance to be one of the first 100 people in the UK to try out the Circle DNA premium test, I initially jumped at the chance.

Then, when it arrived through my letterbox, I hesitated.

Is knowledge power?

Different tests offer different levels of information. My husband has happily sent off an Ancestry test that will mostly provide information to help him with his family tree research. It might even allow him to trace living relatives.

But this very comprehensive test includes insights into my predisposition to my cancer and disease risk, including my risk of dementia. 

Circle calls them “actionable insights” that will allow me to reduce my risk via lifestyle changes and I can absolutely see why that might genuinely be useful. The test includes my dietary profile, a full breakdown of my carrier status for 157 hereditary conditions and insights into my genetic risk of hypertension, heart disease and stroke.

But some of the information it offers is alarming. One of my first thoughts was how I would feel if I discover an increased risk of a potentially horrible illness.

Might such knowledge affect the amount of money I am willing to save into my pension or investments? The cost of dementia care, for example, runs to thousands of pounds a month and can swallow up people’s life savings in a short period of time.

Would knowledge of an increased risk make me more likely to spend rather than save, because tomorrow looks so bleak?

I asked Prenetics CEO Avi Lasarow if there’s a risk this kind of test could encourage a fatalism that causes me to take my long-term financial wellbeing less seriously.

“When an individual is given a lifestyle intervention off the back of understanding their genetics there is greater adherence to the changes they should make,” he says.

“If you understand your genetic blueprint and your health risks, you’re more likely to take preventative action. These tests don’t say you’ll definitely get cancer or dementia, it’s saying you have an increased risk that you can mitigate.

“So it’s not diagnostic but rather, it gives you an insight. We provide access to a genetic counsellor and there’s also access for free to a dietician. 

“All our customers get that extra duty of care to understand how genetics apply to lifestyle, genes are only part of the risk – they work with lifestyle factors.”

I can see the benefits of knowing what my medical risks are so I can mitigate them. But I did have other concerns too.

Will it change my insurance premiums?

I was a little worried that discovering my genetic make-up might have implications for any life assurance or critical illness cover I choose to buy in the future.

What if an insurer asked if I am aware of any increased risks and I had to declare the results of this home testing kit? And what if that pushed up the cost of a future policy?

A spokesperson for the Association of British Insurers put my mind mostly to rest. All of its members and many other insurers have signed up to a voluntary agreement called the Code of Genetic Testing and Insurance.

That means insurers cannot require or pressure customers into taking a predictive or diagnostic genetic test and cannot consider the results of such a test. The only exception to that rule is for Huntington’s disease, where they can ask to see any predictive results.

So if I do see an increased risk for any other particular diseases, I don’t have to provide the results.

“If you do provide it, an insurer will ignore it,” the spokesperson said. “However, you can offer a predictive result which mitigates an adverse family history, which the insurer may then use in your favour. You do have to reveal diagnostic genetic test results.”

What about the data?

Another reservation of mine is that this is my data I am sharing with a commercial company. It’s not even my basic data, it’s my intimate, unchangeable genetic information.

They will store it, keep it and analyse it – they promise me a lifetime of free DNA updates when they come up with new categories and reports.

Lasarow says that regulated companies have to protect the data they hold and ask permission to use it. 

“We don’t sell your data and we haven’t done any deals with pharmaceutical companies,” he says. “We do use anonymised data to analyse but if we did any more we would have to ask. It’s the same as GDPR.

“You can ask to have the data removed entirely from our systems. Of course, the impact of that is that you wouldn’t be able to get updates as we offer them.”

Another serious consideration is that my DNA is not just mine. I have three siblings and three children, part of what I will learn will relate to them. 

If I discover a predisposition to dementia or cancers, then my children and siblings may also have those predispositions and may not want to be informed about them in advance.

Yet my children at least are growing up in a time of changing expectations. Next year the NHS is to launch a pilot project offering newborn babies a DNA check at birth, both to test for any inherited diseases and to asses whether they have a high risk of illness in later life.

If the pilot is rolled out to all babies, then the data will remain on their medical records, potentially revolutionising pre-emptive treatments. 

Perhaps I am being old-fashioned to worry about the dangers of knowledge.

So, will I do the test? Despite my reservations, I think I will. The genetic dice are cast already so finding out what they say feels like common sense. 

Also, it’s just too intriguing to miss, even if there is a risk I regret finding out.

Comments

Share your thoughts and debate the big issues

Learn more
Please be respectful when making a comment and adhere to our Community Guidelines.
  • You may not agree with our views, or other users’, but please respond to them respectfully
  • Swearing, personal abuse, racism, sexism, homophobia and other discriminatory or inciteful language is not acceptable
  • Do not impersonate other users or reveal private information about third parties
  • We reserve the right to delete inappropriate posts and ban offending users without notification

You can find our Community Guidelines in full here.

Create a commenting name to join the debate

Please try again, the name must be unique Only letters and numbers accepted
Loading comments...
Loading comments...
Please be respectful when making a comment and adhere to our Community Guidelines.
  • You may not agree with our views, or other users’, but please respond to them respectfully
  • Swearing, personal abuse, racism, sexism, homophobia and other discriminatory or inciteful language is not acceptable
  • Do not impersonate other users or reveal private information about third parties
  • We reserve the right to delete inappropriate posts and ban offending users without notification

You can find our Community Guidelines in full here.

Loading comments...
Loading comments...