Genetic Testing - Why Insurers Must Stay Tuned In
Genomics is at the forefront of a technological revolution in biomedicine and healthcare through which personalised treatment is fast becoming a reality. Genomics will improve care across a range of health problems and allow more targeted therapy. If insurance is indeed a pool into which participants pay sufficient to cover their risk, shouldn’t insurers have access to this genomic knowledge to use in equitable ways to benefit customers?
A voluntary moratorium on insurers’ use of genetic tests has been in effect in the UK since 2001. The Government and Association of British Insurers (ABI) have agreed to extend it (once again) by another two years, to 2019. This effectively kicks the issue even further into the long grass at a time when genetics in mainstream medicine is advancing at great speed.
The extended moratorium applies only to predictive genetic tests - done before any symptoms or abnormal non-genetic test results suggest a particular condition is present. It doesn’t apply to diagnostic genetic tests undertaken to rule in or out a genetic condition suspected by the clinical picture or other test results. It also doesn’t apply to non-genetic tests such as blood or urine tests for cholesterol, liver function or diabetes. Insurers in the UK are allowed continued access to “appropriate” family medical history.
The continued moratorium re-endorses an agreement arrived at after fevered public debate about the relationship between genetics and insurance, in the months before work to sequence the whole human genome was completed. Significant concerns were raised that sequencing the genome would allow abnormal patterns of DNA in specific genes to be recognised that could potentially be misused.
A second element in the UK moratorium is that the results of whole-genome sequencing performed in the context of major research projects need not be disclosed on application forms - for example, the Government-funded 100,000 Genomes Project. Sequencing the human genome revealed insight into only around 20,000 genes, the 100,000 Genomes Project aims to understand the crucial role the remaining genes play in influencing, regulating and controlling the others. It is hoped extending the focus will pave the way for better disease prevention and personalised medical care, fundamentally changing how health and disease are understood.
Fast and cheap sequencing is bringing genomics within reach of mainstream healthcare - it is likely whole patient genomes will be sequenced in the UK by 2017. How might this impact insurance companies whose use of genetic material remains restricted? The EU has not legislated on genetic testing but the Council of Europe’s Convention on Human Rights and Biomedicine prohibits genetic discrimination. Thereafter, access to gene testing by most insurers is governed internationally, to a greater or lesser extent, by human rights legislation, national law and voluntary moratoria or blanket bans.
Understanding of the role genes play is accelerating, but current restrictions leave insurers unable to tune into the emerging channels of new genetic knowledge or to attempt to use it for positive purposes. Furthermore, an information blackout creates the potential for adverse selection as life insurance customers exert more control over their health and seek information about their individual risk of disease. Is it time insurers give their views on access to genetic information a repeat airing?
It’s unlikely that genetic information should appear on underwriters’ screens any time soon. Currently there is no evidence it allows disease to be predicted with greater accuracy than traditional screening methods used by underwriters. The presence of a genetic mutation does not guarantee disease and a genetic test can rarely predict severity. It’s crucial we also understand the factors that impact the development of disease from a particular genetic mutation.
There is a danger that adverse genetic information excludes high-risk individuals from life insurance making it available only to people who need it the least. Alternatively, if people use genetic information to determine they are low risk, they probably won't buy insurance, pushing prices up while policy numbers decrease.
With genetics, fundamental issues are at stake. Better health outcomes can only improve levels of mortality but an imbalance of information could threaten the continuance of a morbidity-based product such as Critical Illness in its present form. While for underwriters the gene revolution will not be televised, a moratorium doesn’t mean we can simply switch off. It remains important for insurers to be in a position to take positive advantage of genetic developments.