The Genetics 'Moratorium' Ended in 2018

If you have read that there is a moratorium on genetic testing and life insurance, you have landed on a page that is out of date. The moratorium under that name ended in 2018. It was not quietly abandoned, and the protection it gave you did not weaken. It was replaced by an open-ended agreement called the Code on Genetic Testing and Insurance, which does the same job — and, in one important respect, does it more firmly, because it has no end date to worry about.

This matters because so much of what is written online about genetics and insurance still describes the older arrangement, often quoting a date on which the moratorium is said to "expire". Those pages are describing a document that no longer governs anything. The commitment insurers give today is indefinite. There is no cliff-edge in the calendar for you to plan around.

The rest of this page sets out what the old moratorium was, exactly what replaced it and when, what the current Code commits insurers to, and how to tell a stale page from a current one. If your real question is whether a test you are considering will count against you, the headline is short: for almost everyone, it will not.

The short answer: replaced, not lifted

The word "moratorium" is the source of the confusion. A moratorium sounds temporary, like a pause that will one day be switched off. And the older agreements did carry review points and expected end dates, which is why the pages describing them read as though the protection is running out.

What actually happened is the opposite of the protection running out. The industry and the Government agreed to make it permanent in a new form. Since October 2018 the governing document has been the Code on Genetic Testing and Insurance, an agreement that runs indefinitely and is reviewed from time to time rather than counting down to an expiry. So the honest way to describe the position is not "the moratorium has ended and we are waiting to see what happens", but "the moratorium was folded into a standing commitment that has no end date".

What the moratorium was, and how it grew up

Concern that people might be priced out of insurance because of a gene they were born with is not new. For years there was an agreement between the insurance industry and the Government limiting how predictive genetic test results could be used. It went through several versions and renewals, gathering the name most older pages still use: the Concordat and Moratorium on Genetics and Insurance.

Under that arrangement, insurers agreed not to require applicants to take a predictive genetic test, and not to use most predictive results when setting terms. It was a voluntary agreement rather than a law, but the major insurers signed up to it, so in practice it covered the market. The catch, from a reader's point of view, was that each version was framed as running for a set period before being reviewed. That framing is exactly what leaves so many web pages quoting a future date on which the whole thing supposedly lapses.

What changed in October 2018

In October 2018 the Concordat and Moratorium was replaced by the Code on Genetic Testing and Insurance, agreed between HM Government and the Association of British Insurers. Two things changed that matter to you.

First, the time limit went. The Code is open-ended. It is reviewed periodically to keep it current, but it does not run to an expiry date, so there is no scheduled moment at which the protection falls away. Second, the language was tidied and modernised, sharpening the distinction between predictive testing — which is restricted — and diagnostic testing, which is not. The practical protections a healthy applicant relies on carried straight across; if anything, removing the expiry date made the reassurance stronger, because you no longer have to ask what happens when the clock runs out.

What the Code commits insurers to

Stripped to its essentials, a signatory insurer promises two things about predictive genetics. It will not ask you to take a predictive genetic test as a condition of cover. And it will not ask for, or take into account, the result of a predictive genetic test you have already had — whether the result was worrying or reassuring.

The Code also protects your relatives' results: an insurer will not ask for a predictive genetic test result belonging to a member of your family. That is a genuinely important line, because family history and a relative's gene result are not the same thing. Ordinary family-history questions — whether a parent or sibling had a particular condition before a certain age — are still fair game and must be answered accurately; a relative's actual test result is not something you can be made to hand over.

It is worth being precise about the word "predictive", because the whole Code turns on it. A predictive test is one taken by someone who has no symptoms, to find out whether they carry a fault that might cause illness in future — the kind of test offered to a healthy relative once a condition has been identified elsewhere in the family. A diagnostic test, by contrast, is taken because symptoms are already present, to confirm or rule out a suspected condition. The Code protects the first kind and has nothing to say about the second, which is treated as ordinary medical evidence like a blood test or a scan. Confusing the two is the second most common misreading of the rules, after the belief that the moratorium itself has lapsed.

Because the £500,000 exception is aggregated across everything you hold rather than judged policy by policy, it is worth understanding how the counting works before you assume it applies, which we set out in how the £500,000 genetic threshold totals across every policy. For most people it never comes into play at all, a point we make in why most life policies never reach the genetic testing threshold.

The one exception: Huntington's disease above £500,000

The Code contains a single, narrow exception, and naming it precisely is the best way to see how rarely it bites. A signatory insurer may take account of a predictive test for Huntington's disease, and no other condition, where the total life cover being applied for is above £500,000.

Source: HM Government and Association of British Insurers, Code on Genetic Testing and Insurance (2018), published by the Association of British Insurers.

Everything about that sentence is deliberately confined. It applies to one condition, not to genetics in general. It only engages above a high level of cover. And it is about cover you are applying for, aggregated across your policies, not cover you already hold. A BRCA result, a Lynch syndrome result, a consumer DNA kit result — none of these fall inside the exception at any level of cover. Only Huntington's, and only above the threshold, is affected.

Why the pages you are reading are out of date

A few tell-tale signs mark a page as pre-2018. It calls the arrangement a "moratorium" without mentioning the Code. It quotes a specific future date on which the protection is said to end. Or it implies you should rush to buy cover before the rules change, as though a deadline were bearing down on you.

None of that reflects the current position. There is no looming expiry, and no reason grounded in the Code to rush. That said, there is a separate and perfectly rational reason some people do choose to arrange cover before testing — it has nothing to do with a deadline and everything to do with keeping their options open, which we weigh up honestly in whether to buy cover before genetic testing. The point is to make that decision for real reasons, not because an out-of-date page told you the shutters were coming down.

If you are unsure whether a page you are reading is current, the surest check is to look for the name of the document it describes rather than the label it uses. Anything that talks only of "the moratorium", with no mention of the Code on Genetic Testing and Insurance or the year 2018, was almost certainly written before the change and should be treated as historical rather than as current guidance. When in doubt, it is worth going back to the source agreement itself, published by the Association of British Insurers, rather than relying on a secondary summary that may not have been updated since 2018.

What this means if you are thinking about a test or more cover

For a healthy person considering a predictive test, the Code means the result should not stand in the way of ordinary life cover, and does not have to be disclosed on an application other than in the single Huntington's-above-£500,000 case. Diagnostic tests are different: if a test is done because symptoms are already present, its result is ordinary medical information and is treated like any other.

If you already hold cover and simply want more, the questions asked depend on how you go about it, and there are sometimes options that avoid new medical questioning entirely, which we cover in raising your cover without new health questions. If you are applying fresh, you can get life insurance quotes and let an FCA-authorised broker guide you through what is asked and what is not. Where there is a wider medical history in play, our guide to getting cover with a history or a condition puts the genetics rules in their proper context alongside everything else an underwriter looks at.

Scotland and Northern Ireland

The Code is a UK-wide agreement, so a signatory insurer's commitments apply identically in Scotland and Northern Ireland as in England and Wales. There is no separate national version of the genetics rules, and the October 2018 change took effect across the whole of the UK at once.

The one distinction worth holding in mind everywhere is that the Code is a voluntary commitment by the industry rather than a statute — but the insurers who have signed it make up essentially the entire mainstream market, so for practical purposes it governs the cover you are likely to be offered wherever in the UK you live. If a particular insurer is not a signatory, that is a fair question to put to a broker before you apply.

Frequently asked questions

Is there still a moratorium on genetic testing and insurance?

Not under that name. The Concordat and Moratorium on Genetics and Insurance was replaced in October 2018 by the Code on Genetic Testing and Insurance, an open-ended agreement between the Government and the Association of British Insurers that is reviewed periodically rather than running to an expiry date.

What does the Code commit insurers to?

Signatory insurers will not ask for or take account of a predictive genetic test result, and will not ask about a relative's result. The single exception is a predictive test for Huntington's disease where life cover above £500,000 is applied for.

Does the Code cover diagnostic tests?

No. A diagnostic test taken because symptoms were already present, or to confirm a suspected condition, is ordinary medical information. It can be asked about and taken into account like any other result on your record. The restriction applies to predictive testing in people without symptoms.