Raeburn, J A --- "Genetic Tests and Insurance in the Uk" [2001] ALRCRefJl 23; (2001) 79 Australian Law Reform Commission Reform Journal 32

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During the past five years, I have been fortunate to have gained a unique experience of genetics and insurance from three different areas.

First, I have been applying molecular genetic tests as a clinical geneticist. The focus of this work is to answer the questions of patients about their future risks.

Second, from my insurance post, I assess individual queries from insurance companies about genetic risk in people who have made insurance applications. In addition, in 1997, with colleagues, I prepared the Genetic Code of Practice in the UK, which was virtually the first national Genetics Code of Practice in the world. Further duties are advising on genetic policies of the Association of British Insurers (ABI), and preparing applications for the UK Advisory Committee, named the Genetics and Insurance Committee (GAIC).

Finally, my other viewpoint was as a member of GAIC with the remit of assessing the clinical and actuarial relevance of genetic tests and of reporting this to government ministers.

Examining genetic tests in these varying roles has given me insights that differ from other geneticists, from insurers and from the patient support groups, such as the Alzheimer’s or Huntington’s disease associations.

In addition to the obvious stakeholders in the genetics/insurance debate (geneticists, insurers and families with genetic disorders), there are others who have played significant roles — politicians, journalists and science journal editors. In the UK, there are several governmental departments with an interest including the Treasury, the Department of Trade and Industry as well as the Department of Health. Several geneticists have expressed concern that insurers could use genetic information in a way that may result in unfair discrimination.¹

This article sets out to describe the UK situation. Insurers, geneticists and politicians have attempted to develop a fair, evidence-based system in the context of a universal but resource-limited National Health Service (NHS). There have been, and continue to be, conflicts. However, I see ways ahead that are fair to those with genetic disadvantages and fair to other policy holders that do not involve backsliding from best practices in insurance (based on uberrima fides, utmost good faith). I also see a way that reduces bureaucracy and unnecessary expense.

The common theme of genetic predictions and insurance underwriting is the study of risk. How is risk measured and how can we compare risks between two healthy persons, one with a positive genetic test result and one without? The first conclusion from my experiences is that the core data for risk estimation is the same in both medical genetics and in underwriting.² If a clinical geneticist wishes to answer a patient’s question about whether he or she will develop a genetic disease already present in the family, information is needed about the family’s genetic predisposition and whether the cause is present in the individual.³ The insurer’s question about whether (or not) an insurance applicant is a standard risk needs similar data.⁴ If the insurance industry collects data prospectively about morbidity and mortality of people known to have positive genetic tests for a pathological gene mutation, it will assist not only future actuarial assessments but clinical genetic predictions too. The reverse also applies; the main data on which actuaries and underwriters estimate the risk pool of an applicant with a genetic risk is currently available in the genetic literature.

Before May 2001. Until this time, insurers in the UK were requesting access to genetic test results performed for clinical reasons and reported to the individual. Insurers did not wish to carry out genetic tests against the individual’s wishes.

The ABI Code of Practice (1997). The Code of Practice was prepared by myself and a sub-group of the ABI Genetics Committee. It was agreed by the Committee and the industry. This Code of Practice is mandatory for ABI members. In addition to the agreement not to force individuals to have a genetic test against their wishes, there were other essential principles (see Table 1). The Code of Practice also offered a three-stage appeals process at no expense to the appellant.⁵

Since 1997, the Code of Practice has been reviewed regularly. It is noteworthy that there have been no appeals to the independent tribunal, which is the third stage of the appeal process. One interpretation of this would be that violation of the Code of Practice by insurers has not taken place. Another interpretation is that despite violations of the Code, the individuals concerned chose other means to obtain insurance, applying to other companies and (possibly) withholding relevant genetic information.

Table 1

The ABI Genetics Code of Practice

(1) Insurers will not force potential insurance applicants to undergo genetic testing.

(2) Decisions based on a genetic test result (previously undertaken by the insurance applicant as a predictive genetic service) will not lead to extra premiums unless there is evidence of significant additional claim risk.

(3) Insurers will only request access to genetic test results for which reliability and relevance have been established.

(4) Insurers will give reasons for any decisions.

(5) Insurers will not offer lower than standard premiums on the basis of genetic test results.

(6) All clinical and genetic information will be handled with the highest standard of confidentiality.

The Human Genetics Advisory Commission (HGAC). The first topic of the HGAC was genetics and insurance. Its report, The implications of genetic testing for insurance,⁶ was published in December 1997 at the same time as the ABI Code of Practice. In summary, the HGAC emphasised that it had considered only life insurance. It recommended a moratorium for at least two years on the use of genetic tests by insurers. The HGAC report suggested the need for an independent body to adjudicate on the issue.

Government response. The UK government (formed by the New Labour party when it came to power in May 1997) reported on the issue of genetics and insurance in November 1998.⁷ It chose not to recommend a moratorium, deciding instead to set up a new advisory committee, the Genetics and Insurance Committee (GAIC). GAIC had as its remit ‘to establish the clinical and actuarial relevance of genetic tests and assess their technical accuracy’. The decisions made were to be reported to ministers.

GAIC. GAIC was formed in April 1999. Its first task was to produce a template of the data required about individual tests on which clinical and actuarial relevance could be assessed. The draft template, including an application form with 11 specific questions, was sent to ministers in December 1999 and released for public consultation in February 2000. In brief, GAIC set out validation criteria, based on additional insurance risk of 50 per cent (above the standard risk). The final template was published in June 2000 and insurers were invited to submit applications, each involving one genetic disorder and one insurance product.

The ABI submitted an application for Huntington’s disease (HD) and life insurance in August 2000. This was independently refereed and assessed by GAIC. In October 2000, GAIC announced that the application had been approved and that it was in order for insurers to request available HD test results when assessing relevant life insurance applications.

The UK Forum on Genetics and Insurance. This Forum was formed between the Institute of Actuaries, the British Association of Human Genetics, and the ABI. Since 1999, the Forum has run conferences and seminars at which the different disciplines have discussed issues relating to genetics and insurance. The study of specific scenarios led to much discussion and then agreement about how individual cases should be assessed.

The aims of GAIC. The aims of GAIC (and of the ABI) were ambitious. Many countries have attempted to make decisions about the use of genetic tests and life insurance.⁸ However, in the UK, other areas of insurance were included: critical illness, income protection and long-term care insurance. This gave rise to a more detailed examination of the available data and sparked important research.⁹

The Human Genetics Commission (HGC). The HGC was formed in 1999 to advise the government on how new developments in human genetics will impact on people and on health care. There is a particular focus on social and ethical issues. The HGC is chaired by Baroness Helena Kennedy QC — an advocate of women’s and human rights. The HGC was asked by ministers and by GAIC to consider social, ethical and legal implications of the use of genetic tests in insurance.

In 2000, an HGC working group prepared a discussion document entitled, Whose hands on your genes? In parallel, the HGC commissioned a poll, which sought the views of a sample of the public on ‘genetic data’, on confidentiality and on some selective insurance issues. The HGC made an interim recommendation in May 2001 that there should be an immediate moratorium on the use of genetic tests in insurance (up to £500,000). This became a New Labour policy in its manifesto at the UK General Election in June 2001. Under HGC pressure, the ABI recommended a slightly lesser level (£300,000), below which the moratorium should apply.

The GAIC approach seeks to assess the evidence for possible insurance use of genetic test results in underwriting. Of necessity it is deterministic in the sense that the focus is on specific genetic and actuarial evidence. Thus the first conclusion, that it was in order (and evidence-based) for insurers to request access to HD genetic test results when considering applications for life insurance, was criticised for neglecting the wider social issues. There were no complaints that ethical boundaries had been breached — either in the HD application and decision, or in the ABI Genetics Code of Practice. The furore that followed the decision on HD led to intense criticisms of GAIC, of the ABI and of myself. This was also reflected by a report of the House of Commons, Science & Technology Committee.¹⁰

Those who wished there to be a moratorium have had their way. What have they achieved?

If genetic predictions on people with positive genetic tests are correct, the insurance claims submitted by individuals in categories three and four of Table II will be higher than those of others in the standard risk group.¹¹ This will lead to some increase in premiums to cover the extra cost. Overall the effect of a moratorium will be to provide better insurance opportunities but only for a sub-group of people at increased genetic risk. This will be paid for by standard policyholders.

People with a close relative suffering from a relevant genetic disease should declare that, but they will not be required to disclose whether they or the affected person has had a positive test for a causative gene mutation. The uncertainty will likely lead to increased premiums in this pool.

So, benefits for the genetic risk applicant will be minimal if they exist at all. A moratorium is a way to make the normal insured population subsidise a few people with genetic risks. There is no evidence that in European countries that have had a moratorium for some time (for example, the Netherlands)¹² any person at genetic risk has truly benefited.

Table 11

The effects of a moratorium

(1) Applicants for life or health insurance, and the doctors asked to provide reports, do not need to disclose genetic test results.

(2) Insurers may not ask for any genetic test result.

(3) Individuals who know they have positive genetic test results are free to apply for as much insurance as they wish, up to high limits. Their insurance assessment, therefore, would be based on their family history.

(4) If their close family history is minimal (not unusual when genetic testing is cascaded into the family), those with positive tests will be assessed as standard risks.

Barlow-Stewart and Keays reported 48 cases of genetic discrimination in Australia.¹³ Of these, 45 were to do with the insurance industry. The other cases involved discrimination in employment or concerning refusal of operations. The Australian insurance industry already has a Code of Practice, which is similar to the ABI Genetics Code of Practice in the UK.¹⁴ However, Barlow-Stewart and Keays report that genetic discrimination is still taking place. It is interesting to consider how the ABI Code of Practice might have operated in the circumstances described in the Barlow-Stewart and Keays report. First of all, these authors indicated that genetic testing was forced on three individuals, one in connection with a loan covered by insurance and two with regard to employment. Using the ABI Code of Practice, this type of coercion to have a genetic test is proscribed. The authors also detail discrimination reported by individuals who were denied the opportunity to increase their life insurance on the basis of a genetic result risk. Of 16 individuals who appealed against these decisions, only one was successful. Using the ABI Code of Practice, the specific details of individual cases would have been reported to the genetics underwriter of the company and to the chief medical officer. If an adverse decision for the applicant were likely, the case would then be reported to myself, as genetic advisor. From my experience of handling such genetic enquiries for insurance purposes, I would be surprised if most of the cases of apparent genetic discrimination summarised in Appendix 1 of Barlow-Stewart and Keays’ paper could not have been resolved to the satisfaction of both the applicant and of the insurer.

Developing a fair and evidence-based system for assessing genetic risks in insurance is inevitably complex and bureaucratic. Preparation of each application to the Genetics and Insurance Committee took many hours of my own time and of a team of actuaries, underwriters and managers. It would be unrealistic to expect the system to continue like this given the huge number of genetic disorders where testing might be relevant. But we can learn from the UK experience.

The individual insurance applicant’s geneticist already will have estimated genetic risks using the data available and will have conveyed this to the individual.¹⁵ If the applicant agrees and if his or her geneticist was prepared to write reports for insurance companies indicating the risk, then the insurer could underwrite that individual’s policy without infringing confidentiality.

After all the current applications to GAIC have been collated (and this means that the outstanding 17 applications need to be independently reviewed and then assessed by GAIC), a move to this simple but fair option would be appropriate.

There will be some individuals whose genetic risk is at a level that makes insurance more costly, or perhaps impossible. Each country will need to consider how best to tackle such genetic disadvantages, which impinge on a family’s financial resources as well as their health. My experience suggests that the individuals so disadvantaged will be few and the cost of making appropriate provision could perhaps be developed through some insurance pooling mechanism as has operated in the UK to help people with diabetes to obtain insurance. Models could be developed to provide specific help for people with positive genetic tests. The positive genetic test could then be the trigger for access to a premium subsidy so that those with genetic disadvantages can really overcome the adverse financial effects upon the family.

Professor J A Raeburn is a Professor of Clinical Genetics and Consultant Clinical Geneticist. He is the part-time advisor to the Association of British Insurers (since 1996) and was, from its inception until October 2001, a member of the UK Government’s Genetics and Insurance Committee.

As from November 2001, the ABI agreed to institute a five-year moratorium on the use of any genetic test results by insurers for assessing applications for life insurance (up to £500,000) and for applications for critical illness, income protection and long-term care insurances (each up to £300,000). These arrangements were approved by the UK government in an adjournment debate held on 25 October 2001.

Professor Raeburn resigned from the Genetics and Insurance Committee on 17 October 2001, following a perceived ‘conflict of interests’ issue raised by the Alzheimer’s Disease Society, and reiterated by the Science and Technology Committee.

1. K Barlow-Stewart and D Keays, ‘Genetic discrimination in Australia’ (2001) 8 (3) Journal of Law and Medicine 250-262; PS Harper, ‘Genetic testing, life insurance, and adverse selection’ (1997) 352 Phil Trans R, 1,063-1,066; EV Lapham, C Kozma and JO Weiss, ‘Genetic discrimination: perspectives of consumers’ (1996) 274 Science, 621-625.

2. JA Raeburn, ‘Clinical aspects of genetics and insurance: The development and roles of Codes of Practice’ in T McGleenan (ed) Genetics and Insurance Bios Scientific Publishers, Oxford 1999, 105-114.

3. SA Simpson, J Besson, A Alexander, K Allan and AW Johnston, ‘One hundred requests for predictive testing for Huntington’s Disease’ (1992) 41 Clinical Genetics, 326-330.

4. C Smith, ‘Huntington’s chorea. A mathematical model for life insurance’ (1998) Swiss Re Life & Health.

5. Association of British Insurers, ABI Code of Practice, Association of British Insurers, London 1997; Association of British Insurers, ABI Code of Practice, Association of British Insurers, London 1999.

6. Human Genetics Advisory Commission, The Implications of Genetic Testing for Insurance, Human Genetics Advisory Commission, London, 1997.

7. Government Response to the Human Genetics Advisory Commission’s Report on The Implications of Genetic Testing for Insurance, Department of Trade and Industry, Department of Health, London, 1998.

8. B Godard, An overview of European Countries Responses to the Dilemma of Genetics and Insurance, EUROGAPP, Public and Professional Policy Committee of the European Society of Human Genetics, 2000; ESHG Genetic Information and Testing in Insurance and Employment: Technical, Social and Ethical Issues, available at <http://www.eshg.org> .

9. L Low, S King and T Wilkie, ‘Genetic discrimination in life insurance: empirical evidence from a cross-sectional survey of genetic support groups in the United Kingdom’ (1998) 317 BMJ, 1632-1635; A Macdonald, Genetics and health costs: some actuarial models Research Report No 01/2, Genetics and Insurance Research Centre, 2001, 1-21; A Macdonald and D Pritchard ‘Genetics, Alzheimer’s Disease, and long-term care insurance’ (2001) 5(2) North American Actuarial Journal, 54-78.

10. House of Commons – Select Committee on Science and Technology, Genetics and Insurance, The Stationery Office Limited, London, 2000-2001.

11. JA Lowden ‘Underwriting Genetic Diseases’ in R Brackenridge and W Elder, Medical Selection of Life Risks (1998) Macmillan Reference Ltd, 4th edition, London, 89-102.

12. See B Godard, An overview of European Countries Responses to the Dilemma of Genetics and Insurance, EUROGAPP, Public and Professional Policy Committee of the European Society of Human Genetics, 2000.

14. Human Genetics Society of Australasia, Guidelines for Predictive Testing of Genetic Disorders, July 1998 available at <http://www.hgsa.com.au/policy> Human Genetics Society of Australasia, Predictive Genetic Testing and Insurance, March 1999, available at <http://www.hgsa.com.au/policy/gptgd.html> JGL McKeand, ‘The Insurance Industry and New Genetics’, Proceedings of the lecture series Community and the New Genetics, April 1996, Human Genetics Society of Australasia, 19-29.

15. JA Raeburn, ‘Clinical aspects of genetics and insurance: The development and roles of Codes of Practice’ in T McGleenan (ed) Genetics and insurance, Bios Scientific Publishers, Oxford, 1999, 105-114; D Donnai and R Elles, ‘Integrated regional genetic services: current and future provision’ (2001) 322 BMJ, 1048-1052.

Australian Law Reform Commission - Reform Journal

Raeburn, J A --- "Genetic Tests and Insurance in the Uk" [2001] ALRCRefJl 23; (2001) 79 Australian Law Reform Commission Reform Journal 32