- Email: [email protected]
Have you had a gene test?
8995
EDITORIAL
Have you had
a
gene test?
time when the only disorders whose risk could all reliably explored by looking at DNA were single-gene ones, the objective was simple-to give parents-to-be and those thinking of having a family the best available information on which to make an informed choice. In most countries the diseases were rare and any moral issues that the test and its result raised were for couples to resolve. It was noone else’s business. As (or if) medicine moves to a position of being able to offer sound DNA-based advice on the risks of much more common diseases testing will be an important public health concern. It will also be someone else’s business, that of the insurance industry. Last week the UK Health Departments set up a body, "thought to be the first committee of its type in the world", to ensure that genetic testing is provided safely and used ethically. The Advisory Committee on Genetic Testing’s remit does include "arrangements for the protection of personal genetic data" but it is not clear whether the inquisitiveness of insurance companies is a part of that. On Jan 9, Spencer Leigh gave a talk to London’s Staple Inn Actuarial Society under the title "The Freedom to Underwrite". In a well-argued, freemarket case he urged his profession not to "relinquish lightly" this already eroded freedom. A question about the age and cause of death of one’s parents is accepted without murmur as is inquiry about an applicant’s address or whether a car is parked in the road. We take out insurance of all sorts to spread risks but accept that our premiums may be raised when there is statistical calculation to say that we are at greater risk of premature death, and we expect them to be lower if we live in a street that seldom attracts the attention of a burglar. What is so special about genetic testing? Knowledge is too incomplete for any life insurance office to insist on DNA tests, so why should not those who seek cover be asked if they have been tested and what the result was? The insurance industry has already faced one challenge to its freedom. The AIDS epidemic At be
a
at
January 20,
1996
prompted questions, widely vilified, on insurance applications about lifestyle and any HIV test. Life offices at first responded to criticism by stating that a test done, say, as a condition of employment would, if negative, be ignored. Perhaps, but The Lancet knows of instances where precisely this and situation led to prolonged infuriating in last the UK the Since January negotiations. question has been restricted to positive tests but the experience with HIV is discouraging for those who might agree to have their DNA tested, not for their benefit but to help another family member. And think of the exuberance with which US health insurers would greet the chance to turn away those "genetically challenged" by such "preconditions". Many systems of healthcare provision offer treatment irrespective of particular risks or faults. This equity annoys some critics, who would like to get their money back from a climber who breaks a leg in a fall. However, the principle is worth preserving. It reflects a societal wish to provide care irrespective of circumstances. Actuaries are now arguing that it will soon be impossible to talk of medical and genetic tests as separate creatures. They are right, and that means that the ethical debate taking place now will have to be revisited frequently as the background changes and new problems arise. A bolder, more long-lasting solution is required. Is there a consensus similar to that in many countries’ health-service arrangements? "We are born with our genes", it might run "cannot alter them, and wish, as a society, that information on our genes be restricted to direct medical uses. We
thereby forgo
any
premium advantage in being are genetically at low risk".
able to show that we That agreement would need to be formalised. If no such consensus exists, so be it, and freedom to underwrite will merely be self-restrained by the sort of tinkering with wording and with ceilings to sums insured that is now being talked about. The Lancet
133
EDITORIAL
Have you had
a
gene test?
time when the only disorders whose risk could all reliably explored by looking at DNA were single-gene ones, the objective was simple-to give parents-to-be and those thinking of having a family the best available information on which to make an informed choice. In most countries the diseases were rare and any moral issues that the test and its result raised were for couples to resolve. It was noone else’s business. As (or if) medicine moves to a position of being able to offer sound DNA-based advice on the risks of much more common diseases testing will be an important public health concern. It will also be someone else’s business, that of the insurance industry. Last week the UK Health Departments set up a body, "thought to be the first committee of its type in the world", to ensure that genetic testing is provided safely and used ethically. The Advisory Committee on Genetic Testing’s remit does include "arrangements for the protection of personal genetic data" but it is not clear whether the inquisitiveness of insurance companies is a part of that. On Jan 9, Spencer Leigh gave a talk to London’s Staple Inn Actuarial Society under the title "The Freedom to Underwrite". In a well-argued, freemarket case he urged his profession not to "relinquish lightly" this already eroded freedom. A question about the age and cause of death of one’s parents is accepted without murmur as is inquiry about an applicant’s address or whether a car is parked in the road. We take out insurance of all sorts to spread risks but accept that our premiums may be raised when there is statistical calculation to say that we are at greater risk of premature death, and we expect them to be lower if we live in a street that seldom attracts the attention of a burglar. What is so special about genetic testing? Knowledge is too incomplete for any life insurance office to insist on DNA tests, so why should not those who seek cover be asked if they have been tested and what the result was? The insurance industry has already faced one challenge to its freedom. The AIDS epidemic At be
a
at
January 20,
1996
prompted questions, widely vilified, on insurance applications about lifestyle and any HIV test. Life offices at first responded to criticism by stating that a test done, say, as a condition of employment would, if negative, be ignored. Perhaps, but The Lancet knows of instances where precisely this and situation led to prolonged infuriating in last the UK the Since January negotiations. question has been restricted to positive tests but the experience with HIV is discouraging for those who might agree to have their DNA tested, not for their benefit but to help another family member. And think of the exuberance with which US health insurers would greet the chance to turn away those "genetically challenged" by such "preconditions". Many systems of healthcare provision offer treatment irrespective of particular risks or faults. This equity annoys some critics, who would like to get their money back from a climber who breaks a leg in a fall. However, the principle is worth preserving. It reflects a societal wish to provide care irrespective of circumstances. Actuaries are now arguing that it will soon be impossible to talk of medical and genetic tests as separate creatures. They are right, and that means that the ethical debate taking place now will have to be revisited frequently as the background changes and new problems arise. A bolder, more long-lasting solution is required. Is there a consensus similar to that in many countries’ health-service arrangements? "We are born with our genes", it might run "cannot alter them, and wish, as a society, that information on our genes be restricted to direct medical uses. We
thereby forgo
any
premium advantage in being are genetically at low risk".
able to show that we That agreement would need to be formalised. If no such consensus exists, so be it, and freedom to underwrite will merely be self-restrained by the sort of tinkering with wording and with ceilings to sums insured that is now being talked about. The Lancet
133