Insurance after the genetic testing moratorium?

John Chevers

7 August 2017

Since 2001 there has been a voluntary moratorium in the UK (agreed between the Association of British Insurers and the Department of Health) precluding the use of genetic information for insurance purposes, except in very specific selected circumstances. On the face of it, this makes much sense, since it simply takes genomics out of insurance calculations and allows everyone, regardless of whether they have been tested, to access insurance based solely on family and medical history, plus lifestyle data. However, the genetic testing landscape has changed enormously over the last fifteen years.

Genomic sequencing technology is widely available at relatively low cost (basic sequencing of a whole human genome is now possible for under £700, though this excludes analysis). Not only has this transformed the opportunities for clinical genetic testing, but also companies such as 23andme or Human Longevity have found a ready market for commercial products amongst the concerned or curious.

The insurance industry is therefore dismayed to find that whilst it was relatively simple to preclude genetic testing as a policy prerequisite, individuals may increasingly have accessed it themselves, creating a disparity in the information of potential relevance to disease risk available to the two parties signing an insurance contract. The fear of the insurance companies is that individuals aware of a high risk of a significant medical problem could increase the value of their policies to ‘profit’ from their ill-health or early demise. The insurance industry sees this as undermining the principle of disclosure on which the life-insurance industry as a whole is based. In fact, some go as far as claiming it foretells the end of privately-underwritten life and health insurance.

Genomic medicine advances

It might seem that consumers and insurance companies are naturally at odds when it comes to genomics, but this is not necessarily so. Whilst no consumer wants to reveal potentially-sensitive data that might harm their ability to obtain insurance, and insurance companies want claims to be covered by premiums and no big surprises, both parties do in fact have a common interest. It is in no-one’s interest for a patient to become ill or disabled, or to die as a result of a preventable or curable disorder. The policy-holder has a very personal concern for their own good health, whilst their insurer has a professional interest in reducing the number and extent of policy claims. Thus, a detailed understanding of the benefits and application of genomic techniques is an essential toolset for the forward-thinking insurance company, keen to take a more holistic approach to its client base.

Thus, a detailed understanding of the benefits and application of genomic techniques is an essential toolset for the forward-thinking insurance company

This armoury should include consideration of personalised prevention, where an individual’s DNA profile is used along with other relevant information to more accurately predict disease risk and where possible pre-empt disease or ensure early progression towards pathology is detected promptly and managed to minimise harm. Applying such techniques to insurance could potentially provide long-term health benefits for policy-holders, whilst saving insurance companies from expensive treatment, critical illness or life cover claims.

Early detection is key to countering many serious diseases – not least cancer. Genomic medicine has a vital role to play in diagnostics, too – great hope is held out for liquid biopsies – although it is critical to understand the scientific basis behind the emerging technologies and their readiness for wide scale adoption. Finally, precision medicine, which may use genetic testing to identify the most effective drugs to treat disease in a particular individual, also has significant potential for decreasing mortality and indeed cost to the healthcare provider.

A view from the Chief Medical Officer

Genomic information and insurance was given a dedicated chapter in the Chief Medical Officer’s recent annual report, Generation Genome, and makes interesting reading in the light of these possibilities. The report largely supports the status quo, maintaining that the moratorium is effective in freeing individuals from concern that genetic testing may impact insurability, whilst avoiding the need for heavyweight legislation setting awkward precedents for the use of non-genetic predictors. 

The Council of Europe position leaves open the possibility of the use of genomic data by the insurance industry, provided that it is non-discriminatory. Whilst this is hardly a carte blanche, there does seem a willingness to adopt a position which would allow insurers and their clients to jointly benefit from genomic advances

However, the report’s conclusion recommends the "adoption of the key points in the Council of Europe recommendation reflecting international consensus". The latter recommendation takes a more nuanced view of genomics and insurance. Rather than a blanket ban on the use of such data, it proposes principles to guide the use of genetic information – either pre-existing or obtained in a non-mandatory manner. Given careful consideration to topics such as consent for data usage, adequate safeguards for data storage, and a requirement to "take account of new scientific findings", the Council of Europe position leaves open the possibility of the use of genomic data by the insurance industry, provided that it is non-discriminatory. Whilst this is hardly a carte blanche, there does seem a willingness to adopt a position which would allow insurers and their clients to jointly benefit from genomic advances.

Key to winning such concessions would be a conscientious approach to client consent and the scrupulous management of data, as well as scientifically and clinically robust justification for the particular use of genomic information. This is important because, whilst an isolated scientific study may report an association between disease risk and a given genetic variant, it may not be reliably replicated in other studies; even if it is, it may not be a clinically significant risk predictor. These are areas which PHG Foundation has focused on for some years across the genomics sector – if the insurance industry can demonstrate commitment to principles of consent, ethics and scientific relevance, without genetic information compromising universal access to insurance cover, there is great potential benefit for all.

PHG Foundation is actively exploring the impact of genomics on the Insurance industry and can offer consultancy on a range of topics from specific genomic technologies to data management and regulatory risks. If we can help you, please contact John Chevers