Unwillingness to disclose data to insurers could hold back progress in genomic medicine

With the Facebook-Cambridge Analytica data scandal still featuring prominently in the headlines, data privacy concerns are becoming increasingly apparent in spheres beyond social media. A major report into Genomics and Genome editing in the NHS published today by the House of Commons Science and Technology Committee clearly highlights the public’s data privacy concerns surrounding genomic screening. The report praises the progress made by the 100,000 Genomes Project in helping to position the UK as a world-leader in genome sequencing and emphasises the potential of genomics to transform patient care through the development of personalised medicine. However, it details patient’s unwillingness to disclose genetic data to insurers as a key challenge that could hold back genomic sequencing from achieving its potential to improve medical diagnosis and treatment.

The planned launch of the NHS Genomic Medicine Service is scheduled for later this year.  The service will aim to increase the number of people receiving predictive genomic tests and will encourage patients to share their genomic data for the benefit of the research community. This will be important in ensuring that there is a comprehensive evidence-base with which to develop genomic-targeted treatments for diseases such as cancer. Indeed, most people surveyed by the British Science Foundation were willing to share their genomic data with University researchers and NHS workers. However, 95% of those surveyed would be unwilling to disclose their genomic data to insurance companies.

The UK Government currently has a Concordat and Moratorium on Genetics and Insurance with the ABI whereby insurers, broadly speaking, do not require policyholders to disclose their genetic test results as part of the underwriting process. However, once the NHS Genomic Medicine Service becomes established, increasing numbers of people are likely to gain knowledge of their genetic risk factors. The increased predictive power and availability of genetic testing could therefore lead to significant information asymmetries developing between insurers and policyholders.

Moreover, the current Concordat and Moratorium is applicable only until November 2019. Progress in genomic medicine could therefore pose challenges at the Concordat and Moratorium’s next review as the risk of adverse selection against insurers may increase. This is because policyholders, armed with information about their genomic predisposition to certain diseases, may find it easier to self-select when taking out insurance. Those consumers representing bad genomic risks may increasingly take out insurance at a price below their own perceived risk cost, while those consumers who are aware that they represent good genomic risks may increasingly find insurance to be poor value. This situation could lead to insurance companies writing increasing amounts of loss-making business. Given the strong public sentiment against disclosing genomic data to insurers, the threat of being required to disclose any genetic test results to an insurer could lead to a decrease in the usage of the NHS Genomic Medicine Service. An obstruction to data collection through underutilisation of the Genomic Medicine Service could in turn delay the discovery and implementation of potentially life-saving medical insights.

In the current climate of widespread data privacy concerns and tightening data regulation through GDPR, it will be important to focus on finding ways to enable genomic data to be shared for the benefit of medical research while still enabling private insurance companies to remain profitable. For example, if private health insurers can realise cost-savings from more cost-effective genomic diagnosis and treatments this could provide a potential avenue for health insurers to remain willing to allow genetic screening results of policyholders to go undisclosed. Recognising the importance of insurers as a stakeholder that may benefit from future genomic research could help to ensure that progress in personalised medicine can be made while respecting the privacy concerns of the public around the sharing of their genetic data with private companies.

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