Is a Genetic Underclass Looming on the Horizon?

Testing by Insurers and Employers Raises Howls

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LONDON, APR. 28, 2001 ( Fears are increasing that insurance companies and employers will discriminate against people who have an unfavorable genetic makeup.

To avoid this, the United Kingdom government recently announced that the results of genetic tests may not be used by insurance companies to discriminate against patients. At the same time, Health Secretary Alan Milburn also announced an increase in funding for genetic screening, BBC reported April 19. This will include the introduction of a test to identify women who carry a gene linked to an increased risk of developing breast cancer.

Leading up to the announcement of a ban on genetic discrimination was the report of the House of Commons Science and Technology Select Committee, which urged action be taken to prevent the creation of a «genetic underclass.»

Problems already exist with screening, the Times newspaper of London reported Feb. 8. One of Britain´s biggest insurance companies, Norwich Union Life, admitted using unapproved genetic tests for potentially fatal diseases when assessing whether to offer life insurance.

The disclosure came as three insurance firms were questioned by members of the select committee. Norwich Union´s use of tests for cancer and Alzheimer´s violates the Association of British Insurers´ code of conduct, which states that only tests approved by the committee are permissible.

Government inaction

Parliamentarians asked the government to impose a two-year moratorium if the insurance industry fails to agree to a voluntary ban on genetic tests, the Financial Times reported April 3. They also called for an arrangement between the government and the insurance industry to provide an alternative form of insurance for those who would be denied cover because of their genetic defects.

Three years ago, the government rejected the advice of the Human Genetics Advisory Commission, which had recommended a moratorium on the use of such test data. The House of Commons committee said the unwillingness of the government to become involved had contributed to the «atmosphere of confusion and ignorance that pervades the use of genetic tests results.»

The recommendations made by the committee were welcomed by the Alzheimer´s Society, which called it a strike against unfair discrimination, the Times reported April 4. Harry Cayton, the society´s chief executive, said: «I hope the government and the industry will act on these recommendations swiftly and that people will no longer be deterred from seeking genetic tests or volunteering to take part in medical and scientific research for fear of discrimination.»

The Association of British Insurers´ code of practice bars companies from telling customers to undergo genetic tests as a condition of buying a policy, but permits them to require the disclosure of test results already obtained.

In 1998 the insurers association named seven conditions for which it believed there were reliable tests, but last year it reduced the list to five, including early-onset Alzheimer´s and hereditary breast and ovarian cancer.

The Times reported that many large companies already use the test results when setting premiums, but Standard Life, Virgin Direct and the Co-Operative Insurance Society were applauded by the committee for considering only negative test results, which generally lead to cheaper insurance.

An April 5 editorial in the Financial Times observed that insurance companies claim they should be entitled to ask for the results of genetic tests in order to avoid the problem of adverse selection, whereby people choose policies based on private information, distorting actuarial calculations and the pricing of policies.

The editorial noted three main problems with using data from genetic tests. First, the identification of a risk of a specific individual developing a particular disease could make them uninsurable. Second, forced disclosure of test results may deter some people from taking the tests at all, potentially putting their health at risk. Third, the relevance of testing is still poorly understood. Some diseases can be accurately predicted but many tests only indicate that an individual has a predisposition to develop a condition. It is unclear how an insurance company should use such information.

Genetic tests on railroad workers

In the United States the issue of genetic screening came up earlier this year in a scandal over the testing of railroad workers. The Los Angeles Times reported Feb. 25 that Burlington Northern Santa Fe Corporation was running a genetic testing program on unwitting workers who claim their jobs gave them carpal tunnel syndrome.

Gary Avery was diagnosed by a doctor as suffering from carpal tunnel syndrome, aggravated by work. After an operation to relieve his condition he was instructed by the railroad to see a doctor for additional tests. His wife, a nurse, became suspicious upon hearing of the blood tests her husband was to undergo.

After refusing to go ahead with the tests, Gary Avery filed a complaint with the U.S. Equal Employment Opportunity Commission. Once word of the genetic tests spread, five workers complained to the EEOC that they too had given blood during medical exams but were unaware of its ultimate use.

The doctor who developed the test being used on the railroad workers, Phillip Chance, said the test, for a missing piece of chromosome 17, would be of little or no value in screening workers for carpal tunnel injuries. The EEOC says the Avery case could lead to the first court test of the agency´s 6-year-old position that the Americans With Disabilities Act protects workers from genetic discrimination.

Australia bans tests

At the end of 2000, the federal government in Australia banned compulsory genetic tests for life insurance applicants for two years, according to a report Nov. 11 in the Sydney Morning Herald.

The Australian Competition and Consumer Commission, however, declared that thousands of people who have already undergone genetic tests would be required to disclose the results when taking out insurance. During the two-year ban the government will hold an inquiry to examine genetic testing, particularly the questions of privacy and discrimination.

In February 1998, the Vatican called together experts to examine the question of the human genome and human rights. In its concluding declaration the fourth Plenary Assembly of the Pontifical Academy for Life stated that «every use of knowledge derived from research on the human genome with the purpose of stigmatizing or discriminating against those who are carriers of pathogenic genes or who have a susceptibility for the development of certain diseases are morally unacceptable, since they are contrary to the inalienable dignity and equality of all human beings, and to social justice.»

In his address to the participants of the assembly on Feb. 24, 1998, John Paul II observed the scientific progress made in the field of genetics but warned that sometimes knowledge and power become linked in a way that can threaten human dignity.

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