This event took place on 15th May 2024, at the Wellcome Collection, London. Below is the programme and some background information; a summary paper can be found here.
10:30 – 11:30 Session 1 – Chair: Professor Anneke Lucassen
Introduction: Anneke Lucassen, CPM
2023 consultation and its findings: Ana Hallgarten la Casta, DHSC
A summary of patients’ and families’ experiences and concerns: Sophie Peet, Genetic Alliance
Emerging challenges: Dr Padraig Dixon, CPM
Insurance industry view: William Meredew, ABI
11:30 – 11:45 Coffee
11:45 – 12:45 Session 2 – Chair: Professor Michael Parker, University of Oxford
Q+A session for all speakers from first session
12:45 – 13:30 Lunch
13:30 – 15:00 Session 3 – Chair: Sophie Peet, Genetics Alliance
Focused conversations
15:00 – 15:20 Coffee
15:20 – 16:00 Session 4 – Chaired by Tara Clancy, BSGM
Summary, conclusion, and final reflections
BRIEFING NOTE
Background information
This event was jointly organised and supported by the Centre for Personalised Medicine at Oxford and the British Society for Genetic Medicine. The focus for the event was on existing and emerging issues that might challenge current arrangements in the UK about how genetic information can, and should, be used for insurance purposes.
There is a long-standing concern that people might be treated differently or in some sense unfairly because of their genetic background. This might involve being denied access to insurance or being offered lower coverage or higher costs. People may also avoid genetic testing, even where this might be beneficial (e.g. to access extra screening), because of how they perceive it might affect their insurance. On the other hand, if insurance companies can’t use any genetic information to price their policies, this could lead to price increases or unavailability of certain types of insurance plans. Insurers might exit from parts of the market.
Reports from the operation of the Code on Genetic testing and Insurance (see further reading) in the UK show that, for now, genetic information has not had wide-ranging impacts on insurance decisions in the UK, although there are many examples of individuals experiencing difficulties in accessing affordable insurance. Nevertheless, there is a strong case for considering if the current arrangements are fit for purpose because of recent expansions in the scale, speed and sophistication of genetic testing.
Genetic testing: some key information
Genetics involves studying genes and their impact on health. Genomics involves studying the whole genome (both genes and non-coding regions). In practice they are overlapping terms and often used interchangeably. We use the term ‘genetics’ in this document for reasons of continuity and consistency with the Code on Genetic Testing and Insurance.
Each of us has around 5 million genetic variants. Many of these variants contribute to human diversity and do not influence health. Others may subtly, or significantly, increase the chance of certain conditions or how someone responds to medication. Variants can be inherited from parents or can occur for the first time in an individual (i.e. are not inherited from parents).
Genetic tests look for variants. The results of a genetic test can be
- positive: variant(s) known to cause the condition are found
- negative: variant(s) known to cause the condition are not found
- uncertain: variant(s) are found that are of unknown or uncertain significance; this means there isn’t enough information about the variant to establish if it does or does not influence the condition
Different members of a family may have the same variant linked to a condition (for example a BRCA1 gene variant) but not everyone will develop the condition, or people might have more or less symptoms or complications of the condition. This is known as penetrance and expressivity: a genetic variant with less than 100% penetrance will not cause the disease in everyone who has it; a variant with variable expressivity can lead to mild symptoms in some people and severe symptoms in others. Reduced penetrance and variable expressivity are likely to be due to a combination of genetic, environmental and lifestyle factors; many of these other factors are not yet known and/or cannot be measured.
There are many different types of genetic tests, including diagnostic tests, predictive tests, pharmacogenomic tests and polygenic risk scores.
- Diagnostic genetic tests are usually offered when an individual has symptoms that suggest they have a particular condition. These tests usually give a positive or negative result.
- Predictive (sometimes called presymptomatic) tests are often offered when an individual has a family history of a genetic condition and a variant known to cause that condition has been identified in a relative. However, direct to consumer genetic tests, for example, may provide predictive results outside this setting.
- Pharmacogenomic tests are offered to provide information about how an individual will respond to medication. This includes information about whether a particular drug will be effective or how likely it is to cause significant side-effects. Just like other genetic tests, the results of these may be strongly or weakly predictive.
Common diseases, such as heart disease, cancer or diabetes, are influenced by genetic, environmental and other factors. About 20-30% of the risk of common diseases is explained by genetic variants. These variants are usually weak risk factors individually, but thousands of variants together may explain an important part of the genetic component to common disease. Polygenic risk scores (PRS) measure the contribution of these multiple variants to risk. PRS may, when taken together with other risk factors such as age, enable more targeted screening or other interventions.
Life insurance, critical illness insurance and income protection insurance: some key information
Life insurance pays a lump sum on the insured person’s death. Critical illness insurance pays a sum assured on occurrence/diagnosis of a specified list of serious illnesses, e.g. cancer. Income protection insurance pays out a regular amount to replace a portion of income if a person is unable to work because of injury or illness.
These types of insurance serves as a safeguard for individuals against the harmful financial impact of unforeseen or unpredictable events. Prolonged serious illness and death are foreseeable to some extent, but their timing and impact are largely unpredictable. Insurance involves the pooling of risk by individuals at risk of particular events who contribute premiums to a risk pool. Individuals who suffer the event are compensated from the risk pool.
Within this risk pool, the collective contributions of the majority, who do not file claims, support the expenses incurred by the minority who do. For life insurance, the principles of risk pooling also apply, but the payouts are to the beneficiaries (such as spouses or dependents).
The premiums of risk-rated insurance contracts reflect the likelihood of a prospective policyholder experiencing an insurable event and the associated costs borne by the insurer. Greater assessed risk typically translates to higher premiums and/or more stringent contract terms. Lower assessed risk generally results in more favourable terms and lower premiums. Actuarially, a fair insurance contract accurately appraises and prices risk.
Persistent mispricing of insurance, by either overcharging or undercharging certain groups relative to their risk exposure and associated costs, places insurers at a competitive disadvantage and is ultimately unsustainable.
The Code on Genetic testing and Insurance (the “Code”): some key information
In the 1990s, the increasing use of genetic tests and concern over their implications for access and costs of insurance led to the “Genetic Testing Code of Practice”, published in December 1997. This has been updated over time and is now known as the Code on Genetic testing and Insurance. It covers two main types of genetic tests, which are defined in the Code as follows:
- Diagnostic tests: “confirm or rule out a diagnosis based on existing symptoms, signs or abnormal non-genetic test results which indicate that the condition in question may be present.”
- Predictive tests: “predict a future risk of disease in individuals without symptoms of a genetic disorder.”
The Code applies to life insurance, critical illness, and income protection. It has two main principles:
- Insurance companies can’t require or pressure people to take diagnostic or predictive genetic tests to obtain insurance.
- For predictive tests, insurers can only consider the results if the test is listed in the Code and if the amount of insurance requested is over a certain limit.
At present, the only condition for which insurers may ask for and take account of predictive test results is Huntington’s disease in applications for life insurance policies totalling over £500,000.
The Code doesn’t stop insurance companies from using family history (and other factors such as age) to assess disease risk.
Explanation of terms
DNA (deoxyribonucleic acid): the molecule that contains/encodes genetic information
Gene: a DNA sequence that usually codes for a protein or component of a protein
Genetic variants: changes in a gene that can lead to the protein it codes for not working properly or not being formed
Polygenic: multiple genes
Proteins: large complex molecules that play critical roles in how the body functions
Some further reading
Code on Genetic Testing and Insurance, https://www.abi.org.uk/data-and-resources/tools-and-resources/genetics/code-on-genetic-testing-and-insurance/
Code on Genetic Testing and Insurance: the government’s annual report 2023: https://www.gov.uk/government/publications/code-on-genetic-testing-and-insurance-annual-report-2023/code-on-genetic-testing-and-insurance-the-governments-annual-report-2023
Code on Genetic Testing and Insurance: call for evidence: https://www.gov.uk/government/calls-for-evidence/code-on-genetic-testing-and-insurance-call-for-evidence/code-on-genetic-testing-and-insurance-call-for-evidence
Dixon P, Horton R, Newman W, McDermott J, Lucassen A, Genomics and Insurance in the United Kingdom: Increasing Complexity and Emerging Challenges, Health Economics, Policy, and Law, in press. https://dx.doi.org/10.1017/S1744133124000070
Results of the Code on Genetic Testing and Insurance call for evidence https://www.gov.uk/government/calls-for-evidence/code-on-genetic-testing-and-insurance-call-for-evidence/outcome/results-of-the-code-on-genetic-testing-and-insurance-call-for-evidence
The full report from the event can be found below.