UK insurers postpone using predictive genetic testing until 2011

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http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed & pubmedid=1577497\

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BMJ. 2005 March 19; 330(7492): 617.

doi: 10.1136/bmj.330.7492.617.

PMCID: PMC554898

UK insurers postpone using predictive genetic testing until 2011

Mayor

London

Insurance companies in the United Kingdom have agreed to postpone

using information from genetic tests that predicts risk of disease

when they set insurance premiums. The postponement, announced by the

Department of Health, will last until after 2011.

The health secretary, Reid, announced that the government had

negotiated an agreement with the Association of British Insurers, the

trade organisation for insurance companies in the United Kingdom, to

extend the current voluntary restrictions on the use of predictive

genetic test results by insurers by five years, to November 2011.

The agreement is part of a new framework, the Concordat and Moratorium

on Genetics and Insurance, agreed between the association and the

government with the aim of ensuring that insurers' use of genetic

information is " transparent, fair, and subject to independent

oversight. "

The framework states that no one will have to disclose the result of a

predictive genetic test unless it is first approved by the

government's Genetics and Insurance Committee and if the insurance is

for more than £500 000 ($960 000; €715 000) for life insurance or £300

000 for critical illness and income protection insurance. More than

97% of insurance policies are for less than these amounts.

Only a small number of predictive genetic tests are currently

potentially of interest to insurers. These include tests for the BRCA1

and BRCA2 genes, associated with inherited breast and ovarian cancer,

and the HD gene, which is implicated in Huntington's disease.

The only predictive genetic test currently approved by the Genetics

and Insurance Committee for insurance purposes is the test for

Huntington's disease for life insurance.

Figures from the NHS show that 500-600 predictive genetic tests are

done each year for Huntington's disease, and 40-50% of these are

positive. A total of 4635 tests for BRCA1 and BRCA2 genes were done in

2004. About 1000 of these were predictive genetic tests on women with

a family history of genetic breast or ovarian cancer, and 45-50% were

positive.

Antonia Bunnin, director of policy and campaigns with the charity

Breakthrough Breast Cancer, said, " Our research shows that nearly a

third of these women would not take the genetic test if insurance

companies were able to access this data, potentially putting their

health at risk. Choosing to take a genetic test is a difficult enough

decision to make without the added fear that insurance companies may

use this information against them. "

Mr Reid agreed: " Choosing to have a predictive genetic test can be

life saving, and nobody should be put off having such a test because

of fears it will be used against them by insurers. "

The new framework also " states that genetic tests taken as part of a

research study do not have to be disclosed to insurers " .

This removes a potential obstacle to patient recruitment in genetics research.