Insurance and the results of Genetic Testing.

Issues and information

  1. Insurance and conditions with no treatment e.g. Alzheimer's and Huntingdon's
  2. Conditions with treatment - e.g. breast cancer
  3. privacy of information
  4. Discrimination and Insurance - Wertz
  5. Prof. Angus McDonald on Genetic tests and Insurance
  6. Five year moratorium agreed on using the results of genetic testing 31.10.2001

Insurance and Genetically identifiable predisposition with no treatments.

19th June 2001 saw the announcement of a gene combination that increases the likelihood of Alzheimer's by a factor of 16 (see therapy). This will pose a problem for insurers, and certainly is a piece of information that must cause GAIC to act. Alzheimer's is a condition that does not have an effective therapy. The insurance industry will want to protect itself, but also individual's want the security of knowing that their insurance cover will not suddenly be invalidated or that pay outs will be refused because of a genetic predisposition. The UK Human Genetic Commission's call for a 3 year moratorium on the use of genetic information should be heeded - but the time should not be wasted. The clear need in the face of growing information of this kind is a genuine input of funds and effort in research in somatic therapy.

Those who say that the insurance industry is not compassionate or humanitarian are right. It's a business of based on giving the financial means to survive adversity by spreading risk over a wide group of people. Health Insurance that doesn't evaluate risk is what the National Health Service is about.

The growth of genetic information of this kind then indicate two courses of action

  1. Invest heavily (government / private) in genetic somatic therapy
  2. Strengthen National Health Care

Outstanding Issues:


There is an area of real of concern. There is good argument for even keeping the fact of a test private as well as the results.

Some information revealed by genetic testing may be embarrassing and sensitive, and yet irrelevant for insurance purposes. e.g. SRY mutations or additions can lead to XY females, and XX males. i.e. genetically one sex and physically the other. Apart from body form, the only other symptom is likely to be infertility. Discovery of such a variation in testing requires an individual to re-examine the whole meaning of their existence.  It can be a harrowing time mentally. If insurance companies or other organisations are allowed to require disclosure of results if a test takes place, then this may lead to humiliation in an already personally tense situation.

It is clear from Prof. McDonald's models that for all but a few genetic tests, the information is basically irrelevant for insurance purposes.

It seems logical then that Individuals should have a right to withhold the results of genetic testing, providing they declare relevant information disclosed if a test is taken. The burden must be on the insurance company to ask for only the specific information that is permitted by GAIC (Genetics and Insurance Committee ).

Even the fact of a having a test should be considered privileged information. Since this can raise questions about what caused the need for a test in the first place.

So a question of the form: "Have you had a genetic screening test? If yes then send a copy of the results...", would reveal too much information. Whereas a question of  the form - "Has a genetic test ever revealed the presence of any of the following conditions ...", would yield only specific and relevant information. The answer is no if there is no test, and if the test result is no.

On Insurance and Privacy

Dorothy C Wertz, leading  surveyor of genetic topics in the US. She has lead national and international projects which have highlighted differing responses to topics related to human genetics. Geneletter asked her a range of questions about insurance and health care and published the results in June 2000.

Q. Why are people so worried about privacy?

A. When people express concern about privacy, what they usually mean is that they fear they'll be denied some valuable social goods. What individuals want goes beyond a "right to privacy" . A right to "Health care", "elder care", or "family income security" might be a betters way of describing it. To obtain this, we need some universal insurance's, not legal Band-Aids for the present system.

Discrimination and Insurance

Dorothy C Wertz, (as above)

Q. How widespread is "genetic discrimination"?

A. It's probably a drop in the bucket of insurance inequities in general. Several national studies (Wertz, 1999; Hall, 2000) suggest that most reports of "genetic" unfairness are either reports of standard insurance practice (refusal of cosmetic surgery; refusal to pay for procedures done out of state; refusal of additional life insurance immediately after a major operation) or result from people's interpretations of a wide variety of common conditions as "genetic" (obesity, chronic bronchitis, heart disease, infertility). Most people who are turned down by one insurance company find insurance elsewhere, including people with Huntington disease mutations.

Genetic Testing and Insurance

Prof. Angus McDonald of the Herriott Watt University in Edinburgh. Notes from a PEALS seminar.

General Information

There are two insurance models which are in current use.

It is insurance on the mutual model that is raising all the current questions.

Prof. McDonald has used mathematical models to relate risk to premiums. and in general even including factors of adverse selection (people deciding not to insure because they are not in a genetically at risk group) it seems that the potential cost to insurers in most areas in a worst case scenario would fall below 4.3% on the insurance bill. This is within the normal margins of error in calculating risk.

There are only two known areas where the increased risk is genuinely genetically identifiable.

  1. Huntingdon's Chorea. This is a single gene disorder of the fourth Chromosome. It activates during the fourth decade of life. The effects are uncontrolled movements of the body, dementia and death within twenty years of activation.
  2. BRCA1 mutations. These are known to increase the risk of breast cancer to 71% by the age of 70, and of breast and ovarian cancer to 83% by the age of 70.

These are however exceptions. The reason being that these are late onset risks. The breast cancer disposition particularly is often already known through family history.

Other known genetic effects show from before insurable age, or are present from birth. And logically you cannot insure against the occurrence of an existing condition.

Already insurance companies ask for lots of information when giving life cover, or private medical health cover. The questionnaires cover information like, age; smoker/non-smoker; medical history; family history and such. Now the GAIC is asking deeper questions about the right to ask for  family history (i.e. disclosure of medical information about third parties, even if they are family members.)

The Association of British Insurers (ABI) represents the Insurance Industry, and to some extent is a regulating body, even though its effectiveness is questioned at times.

Current Status on use of Genetic information.

GAIC has given a general ban on the use of information from genetic tests unless it has given  prior agreement.

It requires that there must be 

Its first decision on a request to use information was on genetic test results for Huntingdon's disease and this was given in ...

Contrary to the ban the Norwich Union began using genetic information as was revealed in the newspaper earlier this year.

Public Concern

Public concern is fuelled by several factors


  1. For certain specific genetic conditions disclosure is necessary.
  2. For most genetic conditions testing and disclosure is financially insignificant to insurance companies.
  3. If people are asking for four or five times the normal levels of insurance genetic testing disclosure should  be considered relevant.

Recent information 31.10.2001

Source: B i o N e w s 131 - Week 22/10/2001 - 28/10/2001


News that the Association of British Insurers (ABI) has agreed to refrain from asking its customers for genetic tests results has been greeted with open arms this week. Genetics regulators, patients and doctors alike have all breathed a sigh of relief that a five-year moratorium on the use of genetic tests in insurance is now in place.
Others, however, have sounded a note of caution. This is only a moratorium. Although it covers almost all of the industry, it is still just a voluntary code which could be ignored. Talking to the Sunday Times, Andrew Stronach of insurers Virgin Direct, said 'What we need is legislation forcing insurers to stick to the rules - and real powers to punish companies that unlawfully use genetic information'. So is a moratorium enough to keep the insurance industry in line?
A moratorium is, of course, less safe than a legislative ban. No-one ever got sent to court for contravening a moratorium. But moratoria aren't just based upon the idea of good will. Breaching one can often be detrimental to the guilty party, even if the punishment falls short of legal sanctions or financial penalties. In this instance, insurers breaching the moratorium run the risk of losing their membership of the ABI, an organisation which represents them and protects their interests in a number of different domains. And if the breach got out into the public domain, the press attention which would surely follow could only be bad news for the company concerned. In a competitive market, reputation counts.
Of course, some companies, particularly those not represented by the ABI, may fail to take the moratorium seriously. Given this possibility, perhaps the only way to protect prospective policy holders is to make them aware of the moratorium and their rights in relation to it. In the commercial world, a discerning customer is often the best way to guard against sharp practice on the part of the vendor.
- Juliet Tizzard, director, Progress Educational Trust

2 N E W S D I G E S T


Insurance companies in the UK have agreed to impose a voluntary five-year ban on the use of genetic testing. The Association of British Insurers (ABI) announced last week that it agrees with the government on a policy of not asking people seeking insurance to reveal their DNA test results unless they were seeking life insurance cover greater than 500,000 or critical illness cover greater than 300,000. For policies above these amounts, the results of genetic tests may be used but only where approved by the Genetics and Insurance Committee. The financial limits will be reviewed after three years. The ABI says that the ban will bind all of its members, said to represent 97 per cent of the industry.
The moratorium is to last longer than the two years recommended by the House of Commons Science and Technology Committee and the three years recommended by the Human Genetics Commission (HGC). The director general of the ABI, Mary Francis, said that 'the agreement will enable us to have a rational and informed discussion about the best way forward for the UK on genetics and insurance'.
The agreement was welcomed by health minister Lord Hunt, who said that 'the moratorium will ensure that genetics and insurance issues can be progressed in an environment of mutual respect between all the main interests and I look forward to a continuing dialogue with the ABI and all those who have an interest in this subject'.
Baroness Helena Kennedy, chair of the HGC, said in a statement, 'we are pleased that the Government and the insurance industry have accepted the need for full debate on the use of genetic tests for assessing insurance and we urge all companies in the industry to fully abide by the new moratorium'.
- The Guardian 24/10/2001 'Insurers will ignore genetic test results'
- The Guardian:,3604,579740,00.html
- The Financial Times 24/10/2001 'Insurers in 5-year ban on genetic screening'
- The Financial Times:
- The Independent on Sunday 28/10/2001 'Insurance needs a genetic code'
- The Independent on Sunday:
- The Sunday Times 28/10/2001 'Insurers could break gene test ban'
- The Sunday Times: