September 21, 2023
Code on Genetic Testing and Insurance coverage: 3-year assessment 2022


The Code on Genetic Testing and Insurance coverage (the Code) was revealed in October 2018, changing the concordat and moratorium on genetics and insurance coverage. The Code is the sixth iteration of a long-standing voluntary settlement between the UK authorities and the Affiliation of British Insurers (ABI), whereby insurers who’re signed as much as the Code won’t ever require or stress any applicant to undertake a predictive or diagnostic genetic take a look at and can solely contemplate the results of a predictive genetic take a look at for a really small minority of instances. So far, there is just one take a look at for which insurers can request disclosure of outcomes, which is a predictive genetic take a look at for Huntington’s illness, in purposes for all times insurance coverage cowl which whole over the monetary restrict of £500,000. Moreover, genetic testing outcomes obtained by means of participation in analysis don’t must be disclosed to insurers.

The federal government and insurers are of the view that it is necessary that everybody has entry to good insurance coverage on the proper value. The Code goals to offer reassurance to the general public about how and whether or not genetic testing may have an effect on their entry to life, crucial sickness, and earnings safety insurance coverage merchandise within the UK. It additionally ensures that insurers have the minimal data wanted to precisely value insurance coverage premiums for all customers.

3-year assessment and annual reporting

The Code is open-ended with no expiry date. The federal government and ABI have agreed to publish 3-yearly evaluations to permit for the Code to be saved updated. The assessment was scheduled for 2021 however delayed to 2022 because of the COVID-19 pandemic lowering the power to successfully assessment the Code. The ABI and the federal government agreed this delay was possible because of the absence of any quick issues having been raised by authorities, the ABI, or different stakeholders about how the Code was working in apply.

This doc outlines actions being taken for the primary triennial assessment of the Code, together with plans to gather additional proof on points of the Code which will want amendments contemplating an evolving genomics panorama. These points have been recognized by means of in depth stakeholder engagement.

Alongside the dedication to assessment the Code each 3 years, the federal government and ABI have agreed to publish annual experiences to offer commentary on the state of the insurance coverage market and developments in genomic applied sciences, in addition to particulars on compliance with the Code. The third annual report below the Code has been integrated into this assessment, with information on compliance with the Code included at Annex A. Compliance with the Code is monitored by insurers reporting information to the ABI on the variety of genetic take a look at outcomes disclosed by candidates and the overall variety of complaints acquired about breaches of the commitments.

To make sure the Code stays match for objective, the federal government and the ABI agree we should keep a well-informed shared understanding of the present state of genomic applied sciences and the insurance coverage market. To that finish, the ABI commissioned analysis in 2021 with The Cambridge Centre for Well being Providers Analysis (CCHSR) RAND Europe and Cambridge College to evaluate the present influence of genetic testing on the UK insurance coverage market. The important thing findings are set out within the ABI’s 2021 annual report, and additional particulars could be discovered within the full impartial analysis report.

Genomics coverage panorama

The funding made by the UK authorities and the NHS in genomics during the last decade has laid foundations for the usage of genomics in routine scientific care throughout the NHS. The COVID-19 pandemic has accelerated advances within the area of genomics by means of offering an pressing want for the analysis neighborhood to collaborate, quickly sequencing pathogen genomes and sharing information on a world scale. Persevering with to construct on this, the UK authorities are retaining genomics entrance and centre over the approaching years, and this has been demonstrated by a wealth of commitments over the course of 2022.

Pioneering genomics in healthcare

In October 2022, NHS England revealed Accelerating genomic drugs within the NHS – a method setting out a 5-year plan to step up the usage of genomic drugs throughout the NHS. The technique consists of commitments to embed the cutting-edge advantages delivered by genomics to sufferers in all areas of the NHS – from most cancers to inherited illnesses. As a part of the technique, it was introduced that each one infants and youngsters who find yourself significantly ailing in hospital with a suspected genetic situation could have their entire genome sequenced to establish a analysis as quickly as doable. The technique additionally commits to the institution of a Genomics Drugs Service Ethics Advisory Board, to contemplate the introduction of recent applied sciences, return of outcomes, information safety and genomic analysis throughout the NHS.

With genomic testing set to develop into a part of routine scientific care, it is very important be aware that the Code states that insurance coverage corporations can not require or stress any applicant to undertake a predictive or diagnostic genetic take a look at to acquire insurance coverage.

A UK-wide method to genomics

In March 2022, the federal government revealed the Genome UK: shared commitments for UK-wide implementation 2022 to 2025 which units out how the genomics neighborhood throughout the UK will collaborate throughout 2022 to 2025 to progress supply of Genome UK, the federal government’s genomic healthcare technique revealed in 2020.

Genome UK covers 3 primary pillars:

  • analysis and personalised drugs
  • prevention
  • analysis

And 5 cross-cutting themes:

  • public engagement
  • workforce growth
  • supporting industrial progress
  • sustaining belief
  • delivering nationally coordinated approaches to information and analytics

The shared commitments for UK-wide implementation cowl these pillars.

Working with key companions throughout the genomics sector, the federal government has lately revealed Genome UK: 2022 to 2025 implementation plan for England. The plan showcases among the excellent analysis and coverage work that may happen throughout England over the subsequent 3 years to develop, consider and implement new genomic applied sciences throughout the well being and care system and life sciences sector.

Priorities for uncommon illnesses

It’s at the moment estimated that there are over 7,000 uncommon illnesses, with new circumstances regularly being recognized as analysis advances. Genomics has the potential to supply huge potential for rising analysis of uncommon illness as 80% of uncommon illnesses have a powerful genetic part. In January 2021, the UK authorities revealed the UK Uncommon Ailments Framework which outlined the longer term priorities in tackling uncommon illnesses: serving to sufferers get a ultimate analysis sooner, rising consciousness of uncommon illnesses amongst healthcare professionals, higher coordination of care, and enhancing entry to specialist care, remedy and medicines. It dedicated to publishing nation-specific motion plans which would supply extra element on the steps every authorities will take to satisfy the shared priorities of the framework.

All 4 nations have now revealed motion plans, setting out how the framework will likely be delivered. Throughout all nations, actions are included which construct on the UK’s strengths in genomics to extra quickly diagnose and higher perceive these uncommon illnesses with a genetic trigger. In England, annual updates to the motion plan will likely be revealed, reporting on progress towards current actions and setting out new ones.

Desirous about genomics past well being

The Authorities Workplace for Science revealed their future considering report, Genomics Past Well being, in January 2022 which explored how the genome can present insights into individuals’s traits and behaviours past well being, and the way finding out our DNA can current each advantages and challenges to society. The report seeks to generate debate on a spread of subjects of how genomics might be used sooner or later – past its present utility in healthcare. It’s vital to notice nevertheless that most of the subjects mentioned within the report should not at a stage the place they’re getting used within the real-world and are but to be scientifically validated. It’s as a substitute getting used as an vital device enabling policymakers to contemplate key moral, societal and information points related to the doable way forward for genomics.

While the report discusses how advances in genomics may inform insurance coverage insurance policies sooner or later, it recognises that the Code on Genetic Testing and Insurance coverage units strict limitations on the usage of health-related genomic data in figuring out eligibility for insurance coverage and there are at the moment no plans to amend the Code in such a method that will dramatically change the way in which the insurance coverage business at the moment makes use of genetic information.

Genomics analysis

There are a number of ground-breaking analysis programmes underway throughout the UK that may allow a larger understanding of how modifications in our genomes can have an effect on our well being. These programmes purpose to offer extra exact diagnoses, develop higher remedies, and assist predict the dangers of growing sure illnesses. Crucially, individuals concerned in analysis research should not have to inform an insurance coverage firm concerning the outcomes of a predictive genetic take a look at, or some other genetic data that they obtain completely within the context of scientific analysis.

Analysis to raised diagnose uncommon genetic illnesses in infants

In 2021, Genomics England introduced plans for an modern analysis programme to check the effectiveness of utilizing entire genome sequencing to seek out and deal with uncommon genetic illnesses in new child infants. This New child Genomes Programme – led by Genomics England in partnership with the NHS and fogeys – will sequence the genomes of as much as 100,000 infants shortly after they’re born. The information will likely be used to hurry up analysis and entry to remedy for affected youngsters and collect information and proof on its effectiveness to contemplate whether or not it might be rolled out throughout the nation. The programme may assist 1000’s of youngsters, as 9 youngsters are born within the UK day by day with a treatable uncommon situation. The initiative will even bolster approaches to youngsters’s well being and wellbeing throughout their lifetime. For instance, if a toddler falls sick when they’re older, there could also be a chance to make use of their saved genetic data to assist diagnose and deal with them. A large-ranging public dialogue has proven total help for the usage of genomics in new child screening, offering the correct safeguards are in place. Because of this, Genomics England has, and can proceed to, seek the advice of extensively with the general public, mother and father, households with uncommon illness, healthcare professionals and scientists to navigate the scientific, scientific, moral, and societal points that new child screening presents.

Our Future Well being

The Our Future Well being programme, launched in 2021, goals to assist individuals stay more healthy lives for longer by means of higher prevention, earlier detection, and improved remedy of illnesses. Deliberate to be the UK’s largest well being analysis programme, Our Future Well being goals to recruit as much as 5 million adults from throughout the UK and can mix a number of sources of well being and health-related data, together with genetic information, to create an extremely detailed image that really displays the entire of the inhabitants. Researchers will register and apply to check the de-identified data to make new discoveries about human well being and illnesses – information made out there by Our Future Well being will solely be used for this objective. Participant’s well being data will likely be used to calculate illness danger scores, which individuals could have a chance to obtain and can present the power to check the potential of recent diagnostic exams or interventions as they’re found and to see how efficient they might be for individuals at increased danger of sure illnesses.

Utilizing genomics for higher most cancers care

Genomics England, working with NHS England and the Nationwide Pathology Imaging Co-operative (NPIC), will lead a brand new programme geared toward lowered analysis time and enhancing take care of NHS most cancers sufferers. The programme, generally known as Most cancers 2.0, will take a look at the effectiveness of recent genomics sequencing know-how in dashing up a affected person’s analysis and permitting them faster entry to tailor-made, personalised remedies primarily based on their distinctive genome. By leveraging modern applied sciences – used within the evaluation of most cancers information – the programme goals to help the transition in the direction of offering extra predictive, preventative, and personalised most cancers remedy providers.

Variety in genomic information

Genomics England will perform world-leading analysis, in partnership with affected person teams, main clinicians, tutorial and industrial researchers, to scale back inequalities in genomics-enabled personalised drugs, significantly amongst minoritised communities. This 3-year initiative will cowl a complete programme of analysis and discovery, neighborhood engagement, sequencing and data-generation, and the creation of recent merchandise, instruments and approaches. The programme will perform tailor-made sequencing of over 15,000 individuals from numerous, under-represented ancestries in biomedical analysis by 2024 to 2025 in partnership with affected person communities and tutorial and scientific trialists. By way of the initiative’s actions, it goals to earn and maintain the belief of numerous communities in genomic drugs, drive extra and higher genomics analysis with numerous populations, and allow key enhancements in analysis, prognosis, remedy and care involving genomics for numerous populations.

Insurance coverage and genetics

The UK insurance coverage and long-term financial savings market

The Affiliation of British Insurers (ABI) is a commerce affiliation representing the voice of the UK’s world-leading insurance coverage and long-term financial savings business. The position of the ABI consists of serving to to tell public coverage debates, partaking with politicians, policymakers and regulators, highlighting the significance of the sector to the broader financial system, encouraging client understanding of the sector’s merchandise and practices, and supporting a aggressive business. The ABI’s membership consists of over 200 corporations, together with most family names and specialist suppliers.

The UK insurance coverage and long-term financial savings business manages investments of over £1.9 trillion, contributes over £16 billion in taxes to the federal government and helps communities throughout the UK by enabling commerce, risk-taking, funding and innovation.

The aim of insurance coverage

The social objective that underpins insurance coverage is to guard individuals towards the influence of dangers they face. In 2021, the insurance coverage business paid out 98% of life insurance coverage, earnings safety and significant sickness insurance coverage claims, totalling £6.8 billion and equal to £18.6 million a day – the best on file. The typical pay out on life insurance coverage insurance policies was £80,485 and £23,380 on earnings safety insurance policies and pay outs for COVID-19 associated particular person claims nearly doubled from £141 million in 2020 to £261 million in 2021.

Insurers are within the enterprise of defending towards the influence of well being dangers and strongly help modifications which enhance well being and cut back claims. The evolution of genomic drugs and applied sciences to enhance analysis and remedy of sufferers is a major growth within the UK. Insurers help that growth and don’t need issues over entry to insurance coverage to inadvertently hinder the uptake of genetic testing. The insurance coverage business recognises that the general public have issues about the usage of genomic data by insurance coverage corporations, and the way their information is used. The ABI and its members proceed to work with authorities, affected person, client and well being skilled representatives to realize a well-balanced relationship relating to the honest and clear use of genetic take a look at leads to the restricted cases when they’re utilized in insurance coverage.

Why genetics is related to insurance coverage

The ABI and its members help progress in genomic drugs. Insurers recognise that the event of genetic testing is a priceless means for informing the analysis, prevention, and remedy of ailing well being. This has important societal worth, however additionally it is good for insurers and their prospects. Prevention minimises the danger of ill-health and reduces claims which may have a optimistic influence on insurance coverage premiums and enhance entry to insurance coverage.

Insurers welcomed the steps the federal government has taken to roll out the world’s first entire genome sequencing service for sufferers with a suspected uncommon illness and sure cancers. The business additionally helps the federal government’s 10-year technique – Genome UK: The Way forward for Healthcare – to increase the UK’s management in genomic healthcare and analysis and its imaginative and prescient to create essentially the most superior genomic healthcare system on the earth to assist ship higher well being outcomes. Insurers help the developments in genomic drugs by not asking for, or ignoring, outcomes of genetic exams, together with predictive, which can be undertaken completely within the context of scientific analysis.

The federal government additionally recognises that it is necessary for insurers to entry applicable well being data with related client consent. This permits insurers to successfully assess the extent of danger to be lined and precisely value premiums. Asking for related data reminiscent of particulars about a person’s household historical past and socioeconomic information, reminiscent of well being and life-style, permits insurers to grasp the vary of dangers they’re insuring.

Though predictive genetic outcomes could present an extra supply of helpful data for insurers, insurers at the moment imagine the data they have already got out there to them permits a strong evaluation of a person’s dangers. That mentioned, the elevated use of genetic testing could result in a trigger for concern for the insurance coverage business if the data people have about themselves – however which insurers don’t ask for – modifications how people purchase insurance coverage. If a fabric data asymmetry develops, whereby particular person policyholders perceive their danger in methods insurers should not allowed to, this might lead to inaccurate pricing of insurance coverage cowl for people. In the long run, this might result in unsustainable danger administration, rising insurance coverage premiums, and lowered availability of insurance coverage. That is why it is necessary for the federal government and the ABI to often assessment the Code to make sure it stays related for each the buyer and the insurance coverage business.

Variations between insurance coverage merchandise

The Code applies to all insurance coverage merchandise however, in apply, is simply related to these merchandise which use well being data to evaluate danger:

  • safety insurance coverage (offering life, earnings safety and significant sickness)
  • medical insurance (offering personal medical insurance coverage)

Well being and safety merchandise are totally different, however each are involved concerning the potential for anti-selection arising from genetic testing. Anti-selection is when there’s an asymmetry of data between the shopper and the insurer – when a buyer is aware of data the insurer doesn’t – and that data will increase the shopper’s chance of claiming. If anti-selection turns into widespread, insurers may see considerably extra claims than they value for, which in flip may result in a rise in costs for all customers.

Safety merchandise are long-term and pay out lump sums or common quantities of cash. The underwriting course of to evaluate danger and provide coverage phrases typically solely takes place at the beginning of the coverage, however with claims doable at any level from day one to so long as 50 years or extra. For these merchandise, attempting to evaluate future danger is crucial to serving to set the correct value for premiums at the beginning of the coverage. As soon as prospects have agreed to the coverage phrases supplied by the insurer, for many insurance policies, the insurer can not alter the phrases of canopy throughout the coverage. Subsequently, an incapacity to precisely predict future well being danger may result in extra claims than insurers count on and value for.

For well being insurers, personal medical insurance coverage pays for healthcare fairly than paying monetary sums. The present incapacity of well being insurers to make use of genetic data may result in insurers paying giant claims that they weren’t in a position to predict and value for. That would result in insurers excluding sure, dearer, remedies in new insurance policies in the event that they really feel the Code stops them from understanding the genetic dangers that result in important claims. Conversely, the usage of genetic data by well being insurers may present a chance to assist prospects cut back well being dangers proven by predictive genetic exams utilizing preventative remedies.

Journey insurers at the moment have little curiosity in genetic data – they use well being data to underwrite insurance policies however are extra within the danger of emergency medical remedy when travelling than long-term well being danger.

In 2022, DHSC performed the primary 3 yearly assessment of the Code collaboration with the ABI. A stakeholder workshop was held in July 2022 to discover whether or not the Code remained match for objective within the present context, and which points could require updating. The workshop was hosted in partnership with the ABI and introduced collectively stakeholders to offer professional opinion together with coverage makers from throughout the 4 nations, NHS England, charities, affected person organisations, and the insurance coverage business.

Individuals shared their experiences and opinions on points referring to the Code and mentioned questions together with:

  • do you discover the Code simple to grasp?
  • is the Code working properly?
  • are the definitions of genetic testing used within the Code nonetheless related?
  • how can we enhance stakeholder engagement for future evaluations?

Along with this workshop, the ABI search suggestions by means of often internet hosting discussions on the assessment of the Code with their Genetics Working Group – made up of specialists from throughout the insurance coverage business. The Working Group’s ambition is to proceed to offer reassurance to these taking a genetic take a look at and frightened about accessing insurance coverage, while additionally enabling insurers to precisely assess and value danger in a method that helps entry to insurance coverage. The ABI additionally hosts open and business occasions as a discussion board for dialogue on genetic testing and insurance coverage, together with an occasion in 2022 which featured a keynote handle by visitor audio system from Our Future Well being and RAND Europe.

2022 assessment actions

The important thing points raised by stakeholders within the workshop and thru wider engagement are summarised under, together with actions we’ll take over the subsequent 12 months to handle the challenges raised, and to replace the Code accordingly.

Accessibility of the Code – a brand new client information

Stakeholder engagement recognized that accessibility of the Code might be improved, with the wording usually resulting in confusion amongst customers as to the way it utilized to actual life conditions. There’s a danger that if the Code isn’t simply accessible, members of the general public could also be delay from searching for insurance coverage insurance policies as a result of they’re not sure what data to confide in insurers or whether or not they would face increased premiums primarily based on outcomes of genetic exams. We recognise we will do extra to make sure all customers perceive the Code, together with what data they’re required to confide in insurers upon utility of a coverage.

In 2018 the federal government and the ABI revealed a client information alongside the publication of the Code, in addition to a collection of often requested questions offering additional details about the Code. Following this 12 months’s assessment of the Code, we decide to publishing a revised client information in 2023 to make sure the Code stays accessible and helpful. This information will purpose to offer additional readability on how the Code works for customers, in addition to offering healthcare professionals with extra details about how they need to use the Code when interacting with sufferers. Healthcare professionals, particularly GPs, are sometimes the people who obtain requests from insurers for applicable well being data relating to insurance policies. It’s due to this fact crucial the healthcare neighborhood perceive the Code, its limitations, and what sorts of data they’re required to offer upon request.

As a part of the event of a brand new client information, we now have dedicated to working carefully with Genetics Alliance UK – the most important alliance of organisations supporting individuals with genetic, uncommon and undiagnosed circumstances within the UK – to raised perceive essentially the most generally requested questions concerning the Code from their membership base. This data will assist us to empower people to really feel extra assured searching for genetic exams when suggested to take action by a medical skilled, and to grasp how this is applicable within the context of their insurance coverage purposes. We will even work with healthcare professionals to make sure that the buyer information clarifies the Code’s necessities and permits them to offer correct data to sufferers with issues concerning the implications of a genetic take a look at for accessing insurance coverage.

Defining several types of genetic take a look at

The Code refers to 2 totally different sorts of genetic take a look at outcomes which insurers could use for people who’re making use of for insurance coverage:

  • diagnostic genetic exams which verify or rule out a analysis primarily based on current signs, indicators or irregular non-genetic take a look at outcomes which point out that the situation in query could also be current
  • predictive genetic exams which predict a future danger of illness in people with out signs of a genetic dysfunction

The Code commits insurance coverage corporations to not require or stress any applicant to undertake a predictive or diagnostic genetic take a look at to acquire insurance coverage. As well as, solely the results of a predictive genetic take a look at for Huntington’s illness when shopping for life insurance coverage above the monetary restrict of £500,000 will must be disclosed in an insurance coverage utility – in 2020, 96% of life insurance coverage insurance policies had been under the monetary restrict. Different predictive take a look at outcomes, or the truth that predictive exams have been taken, should not have to be disclosed. In the identical method because the diagnostic outcomes of a blood take a look at or MRI scan, an current diagnostic genetic take a look at outcome ought to be supplied as a part of related medical data when making an utility for insurance coverage.

Stakeholder engagement highlighted that there have been rising points surrounding the excellence between predictive and diagnostic exams, as some predictive exams could present an elevated danger of growing a situation and as such could lead to elevated surveillance for the situation. It was questioned whether or not on this situation, the improved surveillance would rely as remedy or administration of a situation – inflicting the predictive take a look at to develop into a diagnostic one.

It’s important for us to make sure this distinction is obvious for customers, medical practitioners and insurers, in order that the right diagnostic take a look at outcomes could be disclosed to insurers and to keep away from confusion over the disclosure of predictive take a look at outcomes when making an utility. It is very important be aware that even when a predictive take a look at result’s mistakenly disclosed in an utility, will probably be ignored by the insurer and won’t influence the insurance coverage premium supplied. We recognise the necessity to make clear these definitions within the context of genomic testing as we speak, fairly than the way it was outlined in 2018. For us to do that, we wish to guarantee we will interact with additional stakeholders and specialists to allow us to totally perceive one of the best ways to seize these definitions for the Code. Our method to doing that is set out within the ahead look part under.

A clear course of for amendments going forwards

There are at the moment no plans to incorporate extra circumstances within the Code that will require customers to offer extra genetic take a look at outcomes to insurers. At current, the Code permits for the ABI to submit a written utility and proof for the Authorities to contemplate proposed amendments to the listing of related predictive genetic exams. The ABI haven’t made any such purposes up to now. Nevertheless, contemplating a quickly advancing genomics panorama we recognise the necessity to present transparency for the way circumstances could be assessed for inclusion, or exclusion, below the Code ought to an utility be made sooner or later.

In 2021 the ABI commissioned Cambridge Centre for Well being Providers Analysis (CCHSR) to undertake analysis to establish the present and potential influence of developments in genetics on the UK insurance coverage business. Central to this analysis was the event of a framework for evaluating the impacts arising from predictive genetic exams (exams that predict the longer term danger of growing a well being situation). The framework considers the traits of genetic exams in addition to behavioural points that affect the usage of genetic exams within the inhabitants, for instance residing a more healthy life-style if a take a look at signifies you’ll have the next danger of growing a sure, preventable, situation. It’s supposed to offer a clear method for evaluating whether or not a particular situation for which a take a look at is obtainable may have an effect on the insurance coverage business, both at the moment or sooner or later, and understanding the important thing components that affect this.

The analysis in 2021 didn’t present proof of great unfavourable impacts on the insurance coverage business primarily based on present genetic testing throughout the UK. Nevertheless, the examine recognized a number of vital gaps within the proof base. Extra proof is required on motivations for partaking in genetic testing and the way this data is used, each by way of behavioural change and sharing with healthcare suppliers and insurers, particularly within the UK context. This might assist to additional characterise the potential influence of genetic testing on the UK insurance coverage business

As genetic testing continues to evolve and turns into extra integrated into the healthcare system within the UK, the potential impacts of those exams on the insurance coverage sector could shift. Eligibility standards for genetic testing within the NHS, the supply of exams through direct-to-consumer genetic testing corporations and scientific and technological developments in genetics will all play a job in figuring out whether or not genetic exams current dangers to the insurance coverage business. The framework produced in 2021 supplies a structured method to monitoring and assessing these developments going ahead.

Within the framework, consideration of those components is guided by 4 key questions:

  1. How helpful is the genetic take a look at for characterising the danger of growing a situation?
  2. How many individuals take the take a look at?
  3. What’s the influence of the situation by way of the size and high quality of life of people that develop it?
  4. What’s the potential for lowering the danger of growing the situation and managing its results if it develops?

We want to collect additional enter on this framework and whether or not stakeholders contemplate it an applicable answer to transparently assessing extra circumstances if required sooner or later. Our method to doing that is set out within the ahead look part under.

Ahead look

The federal government is dedicated to sustaining the UK’s international standing as a frontrunner in genomics. The significance and advantages of genomics are already being realised, with the world-leading NHS Genomics Drugs Service already delivering cutting-edge advantages for sufferers within the NHS. As time goes on, we anticipate that there will likely be additional advances in genomics and reductions in the fee supplies thrilling alternatives for enhancing analysis, prevention, and remedy of illness for UK sufferers. In flip, the Code on Genetic Testing and Insurance coverage might want to stay versatile to handle change within the wider genetics panorama, to make sure customers really feel assured when partaking in genetic testing, and in order that insurers can successfully assess danger and proceed to offer low-cost insurance coverage to as many individuals as doable.

This 12 months’s assessment has highlighted some key areas of growth wanted for the Code to stay each related and helpful in as we speak’s genetics and insurance coverage panorama. These are: the way in which wherein we outline each predictive and diagnostic genetic testing within the Code; and a necessity to stipulate a clear and accessible method to assessing circumstances which will require inclusion into the Code sooner or later.

These 2 points raised by means of this 12 months’s assessment will likely be explored by means of a name for proof, and thru extra stakeholder workshops in 2023 to evaluate how the Code might be refreshed to raised mirror the altering panorama. We’ll invite touch upon essentially the most applicable approach to outline genetic exams going forwards to make sure the definitions stay related and helpful for the Code. We will even be searching for opinion on the CCHSR framework, and our future method to assessing circumstances below the Code, throughout the identical name for proof. This proof will assist to form a extra clear and accessible course of and will likely be integrated into the Code going forwards. This course of will allow us to collect professional opinion to make sure the Code stays mutually useful for each customers and the insurance coverage business and is consultant of all kinds of views. The decision for proof will permit us to hunt views from important stakeholders together with sufferers and carers, healthcare professionals, the insurance coverage business, and the general public.

Alongside our name for proof, we will even publish an up to date Shopper Information – incorporating essentially the most often requested questions from customers trying to undertake informative genetic testing as a part of their healthcare journey. This refreshed information will serve 2 functions:

  • serving to individuals to raised perceive the Code and really feel empowered to answer our name for proof
  • offering customers of the Code with the data they should utilise it successfully

Wanting forwards, we’ll proceed to publish annual experiences and assessment the Code once more in 2025 as a part of our dedication to make sure it stays related and match for objective within the face of accelerating advances within the area of genomics which can be shaping the way forward for healthcare throughout the UK.

Annex A: 2022 annual report on the Code on Genetic Testing and Insurance coverage

Exceptions throughout the Code

The monetary limits for all times insurance coverage, crucial sickness and earnings safety merchandise have remained fixed with out change, and Huntington’s illness stays the one exempt sickness (and just for purposes for all times insurance coverage above £500,000). Which means 100% of purposes for all times insurance coverage as much as the overall worth of £500,000 are protected against having to share predictive genetic take a look at outcomes.

Corporations compliant with the Code

Compliance with the Code and the adoption of the Commitments within the Code is a situation of membership for all ABI members. Most insurance coverage corporations who should not members of the ABI have additionally signed as much as the phrases of the Code. See an inventory of all insurance coverage corporations who’re compliant with the Code.

Compliance information

Beneath the phrases of the Code, the ABI commits to publishing information that demonstrates how insurers are complying with the phrases of the Code. This transparency goals to offer confidence in how the Code is working.

The desk under units out the overall variety of diagnostic, predictive and unknown exams reported to insurance coverage corporations. Beneath the phrases of the Code, insurers can ask for, and use the diagnostic take a look at outcomes reported to them. Insurers don’t request predictive and unknown exams and due to this fact won’t embrace these leads to their danger assessments. Insurers can use predictive outcomes provided by a buyer voluntarily to probably enhance the underwriting choice that was prompted by the shopper’s household historical past. That is usually by reducing premiums or eradicating restrictions on cowl.

The desk reveals constant will increase in each predictive and diagnostic exams over time and displays the rising variety of genetic exams going down within the UK. In 2020 the overall variety of exams disclosed elevated by just one. This might be associated to the pandemic, which can have impacted the overall variety of exams taken and disclosed.

The rising pattern in diagnostic exams is a extra dependable information level than the variety of predictive exams. It’s because prospects ought to disclose diagnostic exams in insurance coverage purposes however most often should not have to reveal predictive take a look at outcomes. Insurers will ignore exams when they need to not have been disclosed. It’s also vital to notice the information doesn’t but breakdown the variety of predictive genetic take a look at outcomes to indicate what number of had been used to learn the buyer by mitigating an adversarial household historical past. The ABI hope to have the ability to present a breakdown sooner or later.

Desk 1: variety of genetic exams per 12 months disclosed to insurers

Kind of take a look at 2013 2014 2015 2016 2017 2018 2019 2020
Predictive outcomes 1,700 1,458 1,336 1,407 1,754 1,937 2,123 2,118
Diagnostic outcomes 2,035 1,879 1,753 1,827 2,061 2,779 3,476 3,502
Different or have no idea 314 331 328 360 310 338 388 368
Complete 4,049 3,668 3,417 3,594 4,125 5,054 5,987 5,988

How the monetary limits apply to insurance policies

The graphs under present the distribution of life, earnings safety and significant sickness insurance coverage insurance policies written towards their respective monetary limits throughout the Code. These graphs solely have a look at new insurance coverage insurance policies which begin that 12 months, fairly than all current insurance policies. It’s because it’s only at the beginning of the coverage that the monetary restrict is utilized and so this supplies a extra correct image and helps establish any rising traits.

There are 2 sorts of crucial sickness coverage proven within the graphs:

  • crucial sickness
  • accelerated crucial sickness

Each pay out a lump sum at declare however whereas crucial sickness insurance policies pay out upon analysis of a specified sickness, accelerated crucial sickness pays out both on analysis of a specified sickness or upon demise (as a life insurance coverage coverage does) relying on which comes first.

Though it is very important monitor the variety of insurance policies beneath these limits, in apply, solely the life insurance coverage restrict is at the moment related. It’s because Huntington’s illness for all times insurance coverage is the one exception throughout the Code. The opposite limits solely develop into related within the occasion of a brand new exception be utilized for and authorised.

At present, 96% of life insurance coverage insurance policies fall throughout the monetary restrict of £500,000; 92% of earnings safety insurance policies fall throughout the restrict of £30,000 (each year); and, 99% of crucial sickness insurance policies and 98% of accelerated crucial sickness insurance policies fall below the restrict of £300,000.

Determine 1: cumulative share of life insurance policies throughout worth bands for 2020

Code on Genetic Testing and Insurance coverage: 3-year assessment 2022

The graph reveals the cumulative share of life insurance coverage insurance policies because the coverage worth will increase. 38% of life insurance coverage insurance policies are lower than £100,000 in worth, and the determine regularly will increase such that 96% of all life insurance coverage insurance policies are for a price of decrease than £500,000. After £500,000 the rise is extra gradual till it reaches 100%.

Determine 2: cumulative share of earnings safety insurance policies throughout worth bands for 2020

The graph reveals the cumulative share of earnings safety insurance policies because the coverage worth will increase. 46% of life insurance coverage insurance policies are lower than £10,000 in worth and the determine regularly will increase such that 92% of all earnings safety insurance policies fall under the worth of £30,000 per 12 months.

Determine 3: cumulative share of crucial sickness insurance policies throughout worth bands for 2020

The graph reveals the cumulative share of crucial sickness insurance policies because the coverage worth will increase. 29% of life insurance coverage insurance policies are lower than £25,000 in worth and the determine regularly will increase such that 99% of all crucial sickness insurance policies fall under the worth of £300,000 per 12 months. After this level the determine will increase solely marginally till it reaches 100%.

Determine 4: cumulative share of accelerated crucial sickness insurance policies throughout worth bands for 2020

The graph reveals the cumulative share of crucial sickness insurance policies because the coverage worth will increase. 23% of life insurance coverage insurance policies are lower than £25,000 in worth and the determine regularly will increase such that 98% of all crucial sickness insurance policies fall under the worth of £300,000 per 12 months. After this level the determine will increase solely marginally till it reaches 100%.


Beneath the phrases of the Code, insurers should report any complaints to the ABI and set out if and the way a criticism is resolved. In 2020, there have been no complaints reported about the usage of a genetic take a look at outcomes by an insurance coverage firm.


The Code continues to work properly. Within the compliance information there isn’t a proof of data asymmetry which could have an adversarial impact on the availability of life insurance coverage insurance policies. The analysis undertaken by the Cambridge Centre for Well being Providers Analysis didn’t present any proof of a present danger to insurers on account of the Code.

With no complaints reported in 2020, the Code on Genetic Testing and Insurance coverage is offering reassurance on how exams are used and never utilized by insurers. The Code continues to offer reassurance to customers while offering the flexibleness to handle change within the wider genetics panorama to make sure that insurers can successfully assess danger and supply insurance coverage to a variety of individuals.

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