Elizabeth France, Britain’s Data Protection Registrar, has told the
Association of British Insurers (ABI) that its policy on genetic testing may
breach the 1984 Data Protection Act. The ABI’s policy, announced in February,
requires that people applying for life insurance reveal the results of any
genetic tests they have had. Most insurance companies have pledged to ignore
test results when they are disclosed by someone applying for life insurance of
up to ÂŁ100 000 linked to a new mortgage.

“The problem with this is that under the act, personal data held for any
purpose should be `adequate, relevant and not excessive’,” says David Smith,
France’s deputy. “Insurers would therefore be in danger of breaching the act if
they recorded on computer test results that they did not use.”

This situation will not change when the European Union’s Data Protection
Directive is implemented in October 1998. The ABI has said it will publish a new
code of practice by January which will call on insurers not to ask for genetic
test results unless they intend to use them.

The ABI may have to make more changes to its code. The government’s Human
Genetics Advisory Commission is now analysing the results of a consultation with
insurers and others. It hopes to report to the government by the end of the
year.

In the US, President Bill Clinton has said he plans to make it illegal for
insurance companies to use genetic tests to deny insurance or raise a person’s
premiums. “Americans should never have to choose between saving their health
insurance and taking a test that could save their lives,” he told a White House
meeting in July.

Elizabeth France, the Data Protection Registrar, has to rule whether
information about individuals is “adequate, relevant and not excessive” for the
purpose for which it is held. But France argues she does not have the expertise
to make such rulings for genetic test results, and has told the government’s
Human Genetics Advisory Commission of her concerns.

Many British insurance companies already expect people to disclose results of
any genetic tests carried out before health or life insurance is provided,
although they do not use this information if the value of the policy is less
than ÂŁ100 000 and the insurance is linked to a new mortgage. No complaints
have yet been received about this practice, but if one was, France would be
obliged to investigate it under the 1984 Data Protection Act.

France argues that, ultimately, the use of genetic tests to predict more
accurately the future health and life expectancy of applicants for insurance
raises questions that go far beyond the scope of the 1984 act. “There is a whole
social policy issue here which isn’t for us to address,” she says. “Is insurance
about sharing risk [between people] or is insurance about you and the risk you
±č´Ç˛ő±đ?”

Vic Rance, a spokesman for the Association of British Insurers, argues that
insurance companies try to ask only for information that is relevant to setting
a premium. “I can’t see that there are any grounds for a valid challenge,” he
says.

However, privacy issues are expected to be a major focus of the Human
Genetics Advisory Commission’s consultation on genetics and insurance, to be
launched in a few weeks’ time.