Should insurers have access to genetic tests?

Insurance companies in Britain are to be allowed to use the results of a particular genetic test in their calculation of premiums.

The test for Huntington's disease is the first to be given this type of approval. Other tests, for Alzheimer's disease and hereditary breast cancer, are awaiting sanction.

Insurance companies cannot make people take such tests, but those who have them could be forced to disclose them.

Critics say this will lead to vulnerable groups being denied insurance or having to pay higher premiums.

Should insurance companies be allowed access to such tests? Will already vulnerable people suffer yet another form of discrimination? Or are these tests no different from other medical exams?

This debate is now closed. Read a selection of your comments below.

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Your reaction

The purpose of insurance is to protect against risk, such as the risk of having an accident or contracting a disease. But genetic disorders are pre-determined. You have either already got the disorder, or you do not. Risk is simply not a factor. It would be like allowing accident victims to take out insurance against the accident they have already had. This is the role of National Insurance and basic health care.
Simon Hibbs, England

That is appalling! I for one, will NEVER disclose that information to anyone, and neither should you. No one should have the right to see your genetic record! Next thing, your employers and bank managers will be having a good peek at your life and it's fate. This thing is becoming a tad messy.
Brenne Buckley, UK

This idea of genetic testing is just another way of leaving behind the concept of a 'service industry' and reaping massive benefits from customers

Kevin, GB

If insurers carry on with this idea they will create an uninsurable underclass of people whose families will suffer in the event of death or critical illness. I have worked in the insurance industry and I know that all they require to make a profit is the first two years of premiums from the client, and then for that client to live for about twenty years. Anything they receive in premiums beyond those two years is a bonus. This idea of genetic testing is just another way of leaving behind the concept of a 'service industry' and reaping massive benefits from customers. "The customer must always live"!
Kevin, GB

I know of two people who are afflicted by certain diseases and by letting insurance companies have their test results will only blight them and their families for generations to come. I say a resounding no.
PSW Green, Yorkshire

Genetic tests for insurance purposes would be good to accurately work out premiums for pensions. Then at least you know you wouldn't be paying over the odds if your time was up sooner than you reckoned.
Russ, UK

NO WAY! When will this continuous depersonalisation stop? This is one of the greatest abuses of personal liberties in history. It is totally discriminatory, and the fact that our government is so willing to hand over lets face it extremely personal data to completely unknown "managers" fills me with horror. It's a policy akin to a fascist regime. Throw it out now!
Andy, GB

So, now we have found something else to discriminate against. What will it be next or has this now covered everything? Lets face it, the insurers only want to know so that they can charge more!
Beckie, UK

Once the insurance companies have successfully targetted their high premiums through the use of genetic testing they will of course be reducing the premiums for those who are not subject to genetic disorder. Somehow, I think not. I don't know why they don't go the whole hog and include a piece of small print which invalidates the life insurance policy in the case of death.
Andy Guilbert, UK

The respondent who provided you with the headline "Only the creator knows what will happen" better be careful. If all death is an act of God you'll never get them to pay out at all. This policy is nothing short of offensive. Even those showing a genetic tendency are not guaranteed to contract a disease. Perhaps companies which use such techniques should be forced to mention it on all advertising so that the consumer is able to decide to take their business elsewhere. It is only fair that the consumer should be aware of a predisposition to meanness after all.
Andy, UK

To make this work the profile of the population applying for insurance must match the profile used to calculate the policies.

Mick, UK

The problem is fundamentally one that insurance policies are calculated on population statistics and assume that the people taking out the policy are a random sample from this population. This fails if only people who know they will be quid's-in from the policy actually take it out.
To make this work the profile of the population applying for insurance must match the profile used to calculate the policies. The only solutions are either to tailor the calculations to the individual circumstances, which means being party to all available information or to find some way to insure the whole population. Take this one step further and you end up with something called National Insurance...
Mick, UK

I work in the reinsurance industry. My major concern about this approach to individual underwriting is that it undermines the fundamental principle of insurance, which is the mutualisation of risk through the law of large numbers. We should be concerned about this development.
Chris Klein, UK

If I had suffered a heart attack in my past I would be expected to tell my insurer. If I have information whereby I know I am a high risk I also have a duty to disclose it. However, I do not believe an insurer has the right to require me to take a test prior to insuring me. The whole point, after all, is that it is a risk on both sides - I risk losing my money if I stay healthy and they risk losing theirs if I don't. Basically it's not much different to backing the 3:15 at Newmarket, except that anything self-inflicted is excluded.
James Bradshaw, UK

It is disgusting to think that private medical information will be released to a rabble of faceless 'managers'.

Chris Ambler, UK

If all an insurance company wishes to do is calculate premiums, why do they need to know the identity of the individual? All they need to know is the prevalence of the disease in their subscriber base. It is disgusting to think that private medical information will be released to a rabble of faceless 'managers'.
This is not a minor matter: it is a serious breach of personal liberty. Perhaps the insurance companies only want to insure healthy people who don't require any medical attention during their period of insurance? Arian insurance perhaps?
Chris Ambler, London, UK

Someone who knows he/she has Huntingdon's Chorea is betting on a sure thing if allowed to keep the results of a genetic test from the insurer. No different to trying to hide a heart attack or some other significant fact from an insurer. At least in the latter case the prognosis is LESS certain.
To give genetic test results to an individual but keep them secret from an insurer is like letting someone know what the winning lottery number will be in advance of purchasing the ticket - it allows the individual an unfair advantage over everyone else buying tickets/insurance. By all means consider having the whole population subsidise unfortunate sufferers of Huntingdon's Chorea - but not just other purchasers of insurance.
G Lewis, Australia

The whole point about the insurance business is about differentiating risk groups and offering different prices to each. What is the difference in principle between offering premiums based on age, and offering premiums based on some genetic test? Why should someone with a conventional illness be refused medical insurance cover, or made to pay an higher premium, while those with (potential) illnesses detected through genetic tests can be insured as if they did not have the affliction? The logical result of denying knowledge of illnesses to insurance companies is to require insurance companies to offer exactly the same premium to all applicants. They would then go bust as only the risk people would bother insuring.
Steve Dooley, England

Don't give the insurance companies the power to filter people

D M Cooper, UK

It seems to me that if there is no regulation regarding who has access to genetic profiles we will be creating a new sub class of people which will, without doubt, have implications on mortgages, jobs, maybe even people wishing to join a club of some sort will have to be scanned before approval. So once again, the very people who need the most help will be the last to receive it. Don't give the insurance companies the power to filter people.
D M Cooper, UK

How very sad. Insurance, a method arrived at to humanely pool the resources of a community as hedge against life's contingencies becomes over the centuries a privatised, for profit activity that in and of its self becomes, for its subscribers, a risky proposition. Bit by bit we cede our humanity for short-term profit and the illusion of security. In the final analysis we may find we have neither.
Robert, USA

Hitler would have loved genetic testing

Mark, Wales

Has nobody out there seen the 1998 film "Gattaca"? I think it should be compulsory for all these technology goons who think "if its high tech, its got to be good". Hitler would have loved genetic testing, he could have saved a lot of time and money with it.
Mark, Wales

The genetic dream was not about setting up a situation were insurance companies end up constituting a selective pressure on human evolution. Under the proposed regime people with genes detrimental to the insurance companies profits are put at a selective disadvantage to everyone else. This feels ever so slightly like eugenics by default as resources are transferred from the group that has the highest insurance liability to that which has the least.
Vincent Pilotti, UK

Only the creator knows what will happen

Firas, Canada

Each person grows up in his/her own unique environment that even though a person is more likely to get a disease than another is just a probability game. Only the creator knows what will happen. Our society is already too materialistic, more greed leeds to more grief.
Firas, Canada

This genetic discrimination broke the random contract based on uncertain predictions. It would be contrary to the requirement of good faith.
Federico De Lorenzo, Argentina

Insurance was supposed to cover everyone and spread risk and cost

Robert, UK

This is very predictable in a country where profit gain is nearly always the motive for action of any kind, alas what's best for people doesn't get a look in. Our country falls further into the cesspool encouraged greatly by the Thatcher government and sadly continued by this one. I thought insurance was supposed to cover everyone and spread risk and cost.
Robert, UK

Access to genetic information amounts to basis for discrimination. People will be left uninsured and jobless. Genetic information should be used to prevent serious illnesses, not to leave ill people unattended.
Mariela, Argentina

Insurance companies' sole purpose is to make money by playing the odds with your life

Phil, UK, currently USA

I know from personal experience just how insurance companies in the US treat patients with "pre-existing" conditions, and can think of no more prospective "eugenic discrimination" than allowing insurance companies to use ANY form of genetic information to decide premiums. It should be within a legal binding framework, that insurance companies cannot set premiums on genetics, but instead encourages patients and companies alike to seek the best possible treatments, which might include preventative measures upon diagnostics. Anything but this wooly "well its just Huntingdon's" statement, which should really be appended with "for now". Let nobody fool themselves that insurance companies are there to ensure your survival or good health. Their sole purpose is to make money by playing the odds with your life (the profession of being an actuary )
Phil, UK, currently USA

I think the genetic descriptions of people being either 'VALIDS' or 'IN-VALIDS' depending on their genetic makeup, from the film Gattica best describes the fun and gamed that await us as a result of this ruling.
Derek Northcote, UK

Punished twice! It is unbelievable! This decision should be overruled by the European Commission, if possible. I am happy to live in the Netherlands where we have since a couple of years a law which does not allow insurance companies, employers etc to ask questions about hereditary diseases in the family up to dfl 300.00.-. This law has been received by pressure of the Dutch Huntington Society and other patient organisations.
Gerrit Dommerholt, Netherlands

We should immediately boycott any insurance company who uses these immoral methods

Jock, UK

This is thinly disguised facism. The "weak" are being punished for something over which they have no control. Where does this stop? Do we get to a stage where only blue eyed Aryan people will get cheap insurance? I understand that it will reduce pay-outs for insurance companies but surely this is the whole point. I insure my car, not because I am going to crash but just in case I do. It is a breach of trust and we should immediately boycott any insurance company who uses these immoral methods. Their premiums may be lower but you cannot ethically use them. I shall be closely reviewing all my insurance policies.
Jock, UK

Of couse not, we do not need to give any more information to the insurance companies to be used for them to decide who is worthy of receiving health care. So long as the people pay for their health insurance and/or are a part of a national health insurance program he/she should be entitled to the best medical care and treatment possible. On the other hand, if profits are more important than peoples health and wellbeing than why not give genetic information to the insurance companies if it makes them happy?
John, Wisconsin, USA

This is the start of a dangerous precedent

Dave Walker, UK/Switzerland

While the knowledge acquired from such tests can be of great value to individuals, allowing their use by insurance companies can only lead to discrimination. The more tests that become available, the greater the discrimination, the greater the risk that some individuals will be "written off" as too greater financial risk at birth, or even before! I think this is the start of a dangerous precedent that could have all sorts of side effects, some that will only become apparent with time. It can only be a matter of time before we have compulsory health insurance in the UK. When there are hundreds of these tests and you fail several of them, what price your compulsory Insurance premium? Better to think ahead use these tests only for improved health care, and not yet another form of financial discrimination.
Dave Walker, UK/Switzerland

It is a duty for the genetically superiors to support the inferiors. It is as good as you can say I want cheap car insurance because I can prove I'm a good and careful driver. What if the superior, because of a random mutation becomes incapacitated or seriously ill? We should all share the risk. No to genetic testing.
Ioannis, UK

Insurance companies should not get access to genetic tests. It has nothing to do with the question if somebody lives unhealthy or not - genetic material makes the difference between all human beings from the birth on. And those differences should not be judged, no one should be favoured. Nobody is able to influence his genetic material - today. But what's the situation like tomorrow? We will be able to influence the outer appearance and even the intelligence of our children. And some people will try to change it, just to make sure that their child will have good chances in life. But this ability will not be offered to all of us - only to the ones who are rich and have influence. Such a development would be supported by the decision to give those people better conditions who are more healthy. The parliament has to forbid all kinds of judging the individual by his genetic material. It is right to change the genome to fight certain illnesses (for ALL) but not to take the forbidden step into a future where super-human-beings and poor not-optimised Homo-sapiens live together. That's a NAZI-idea. Please - don't make the same mistake again.
Fabian Wenner, Germany

If you've had a heart attack you don't pay the same premiums as everyone else, if you're 17 you pay more for your car insurance than someone who is 37, but no one can help being 17. Insurance companies are not payers of disability benefit. They are there to make a profit based on an assessment of risk, and as part of the contract of insurance the person who is seeking to be insured should disclose all relevant facts.
Hugh Thompson, England

Role on genetic testing!

Paul, UK

In the same way that it's unfair to discriminate against those with bad genes, it's unfair for the genetically superior to pay higher premiums than necessary. Role on genetic testing!
Paul, UK

It is quite simply a disgrace and I am unable to comprehend what the Government is doing. They are supposed to be a party that is against discrimination, but this is the beginning of some of the most horrific discrimination imaginable!
Geraint, Belgium

It is simply naive to think that someone can have a positive genetic test, know they are going to have a certain medical condition in later life and still get insurance for it without paying extra. Genetic tests are not necessarily "good news" for everyone and that should be carefully considered before taking one.
David, UK

Genetic tests used for insurance purposes are indeed a form of discrimination. If one is not "genetically perfect he will definitely have to pay higher premiums as he/ she is prone to illness and disability. However will this tendency towards genetic testing just stop at insurance assessment? The answer to the question is unknown. But isn't diversity and "imperfection" one of the features of humanity? Will one in the future see two categories of human beings; a higher class, perfect product of genetic engineering and the rest of us second class "imperfect" citizens?
Chiara Sorbi, Italy

Insurance companies already get too much money and provide very limited services for paying customers

Denise Davis, USA

Insurance companies already get too much money and provide very limited services for paying customers. Why give them any more ammunition to block further medical care or deny insurance to those who need it? Many times insurance is paid for and never used, then when you do use it they raise the prices. This will only give them more reasons to raise the already skyrocket price of insurance.
Denise Davis, USA

So what is new? Insurance companies already have access to our medical records and are entitled to ask probing questions about our parents' diseases, our sexual habits, how much we drink/ smoke, etc. Like it or not we are already discriminated against and it seems fairly academic whether or not genetic test results add to this situation.
Hugh, UK

Patients are able to have access to genetic information not available to insurers. This will further accelerate the moral hazard in health insurance in the US where low risk patients will gamble and remain uninsured while high risk patients (based on their known genetic information, etc) will stay in the insurance pool driving up the costs for those who remain. American health insurers will have to have access to this data in order to make actuarial calculations. The problem exists when they use the data to deny coverage, which should not be permitted.
Jerald R. Schenken MD, USA

This is a personal issue for me. My father died as a result of Huntingdons Chorea. I have been lucky - I have had the test and I will not contract the disease in later life. My sister has decided not to take the blood test, for her own personal reasons, and I can only respect those reasons. No group of people should be denied access to basic rights and services. I never thought that a supposedly socialist government would actively subscribe to George Orwell's theory, "All people are equal, only some are more equal than others". I was obviously wrong after all....
Ian, UK

As it stands today, scientists still do not know how many genes exist in the genome that pre-dispose individuals to disease (in fact, they don't even know how many genes there are period!). It may make sense presently, when the genetic basis for relatively few diseases are known, for insurance companies to think they can discriminate using this information. However, within the next century, where the function of all human genes is elucidated, I'm sure we will discover that everyone is predisposed to at least one disease. We just don't know it yet!
Sarah, Sweden (Ex-UK)

So now it's genetic testing to cut off the weakest members of society who need help the most? What next, a law that says only Oxbridge graduates are fit to provide genes to parent children?
Alex, UK

Is this the "Master Race" by stealth?

Richard S, UK

Where will such proposals lead? Every foetus screened by parental demand and subsequent on-the-spot abortion if any tiny, possible genetic disorder is discovered? What about retrospective action by insurance companies? Is this the "Master Race" by stealth? What about future medical developments curing or suppressing a genetic disorder which lead to advances in general understanding of ourselves? Very dangerous, these insurance companies, playing "God" to protect or increase their profits.
Richard S, UK

Genetic testing is an excellent idea. Individuals can now ascertain that they are not prone to various diseases and therefore save themselves the time, money, and effort in purchasing insurance cover that they will never need. How do insurance companies feel about this angle?
Laurence, UK

A simple point. If any insurance company discriminates within their policy then let the buyer vote with his cash and go else where. If all the insurance companies discriminate - don't give any of them your money. Vote with your cash. If they discriminate - change your insurer immediately - never mind the shareholders. They - the Insurance companies will soon give you the cover YOU want!
Tom, UK

This is completely unfair. My husband has one of the identified diseases (polycystic kidney disease) and has already been hammered by insurance companies. They won't even offer him insurance which covers everything BUT that disease. My argument has always been, what if he gets knocked down by a bus tomorrow? Or pushed under a tube train by a schizophrenic? It seems unfair that he has to pay vastly greater sums to insure himself against the same risks as everybody else faces. It's nobody's fault that they suffer from a genetic condition and they shouldn't be punished for it.
Kate Crisp, England

People should have higher premiums if they lead unhealthy lifestyles

Ish, UK

Genetic tests should be disclosed to no-one but the individual involved and the medical professions, these results should be no-one else's business! Life is about chances... we could be knocked over by a bus tomorrow but we can't do a test for that? If current trends continue most us will get cancer at some point in our lives. Are we to be discriminated because of our environment?
By all means people should have higher premiums if they lead unhealthy lifestyles but we don't see them raising premiums for people who don't exercise or eat junk food. This is one of the worst cases of discrimination I have ever seen, if this is allowed to continue, Britain is going to become a very nasty, twisted place to live.
Ish, UK

I am appalled that the UK has given insurance companies access to genetic information.
Shame shame shame on the government. This is something I would expect from the conservatives.
Michael Walshe, USA

As someone with a relative suffering from Huntingtons (although not having had the test, medical advice indicates that I will not suffer myself). I believe that people who have a positive hereditary disease test should not be discriminated against, after all it is not a result of anything they have done.
If these tests can be used to influence insurance premiums they may lead to individuals not having a test and thus denying themselves preventative medical care. I for one am very grateful for the health I enjoy and paying a little more on my insurance for the benefit of less fortunate people is, I think most would agree, a small price to pay.
James Shaw, England

It's only fair that people who know they are likely to contract a hereditary disease to own up to an insurer

Phil George, UK

At first I thought the government's decision was appalling. But then I read the full announcement. If the genetic tests are 100% reliable (not 99%!) then I think it's only fair that people who know they are likely to contract a hereditary disease to own up to an insurer.
Where I would draw the line is an insurance company forcing you to have any genetic tests. That would be completely out of order. I'm not sure I'd want to discover I was refused insurance because I've got a 95% chance of dying from a horrendous disease in 30 years.
Phil George, UK

I have had first hand experience of how Insurance Companies deal with genetic test results. I have a number of policies with a major insurance company, all at a premium because of a possible hereditary illness. Over a year ago I supplied the company with the results of a genetic test that said I was not at risk. I have chased the insurance company for over 8 months, with constant promises of a reduction, and a rebate, I am yet to get any result from them.....
Dave, UK

Why is it, that commerce is always allowed to profit at all costs? This policy will further divide our society into rich and poor and healthy and not so healthy. Who else will jump on the bandwagon? For example, will employers choose to test for genetic disorders when recruiting? Where will it all lead?
R Harris, UK

I thought a civilised society protected its most vulnerable citizens

Gary Hart, UK

How long will it be before such companies start discriminating against people because they are from a particular ethnic group or because they live a certain lifestyle. I thought a civilised society protected its most vulnerable citizens. This type of behaviour is an infringement on an individuals human rights. Would an insurance company get away with not employing someone because they were HIV positive or had Parkinson's disease or Cancer - I think not.
Gary Hart, UK

The biggest killers of people in the age range who actually take out life insurance (to cover mortgages, or provide for young children) are accidents, suicide, self-inflicted conditions like drug abuse, and non-genetic diseases like AIDS. Genetic testing won't make any difference to your chances of dying before 50 - but will provide a smokescreen for increased premiums.
Julian Hayward, UK

Insurance companies should think very carefully about the long-term repercussions of embarking on this path

Richard Godivala, UK

The idea of excluding cover or demanding higher premiums for certain illnesses would render the insurance available useless to many people. If people work out that they won't be covered for the illnesses that they are most likely to get, what's the point in taking out cover? You'd probably be better off forming a mutual society where everyone puts some money in on a regular basis, and people who need it are provided with money as required from the fund. This would have the advantage of keeping the money for those people who need it, rather than pouring it down the drain, and if adopted on a large scale, would put insurance companies out of business. If the companies don't provide decent services to their customers, people will go elsewhere. Insurance companies should think very carefully about the long-term repercussions of embarking on this path.
Richard Godivala, UK

What are insurance companies but rip-off merchants, if the only people they want to provide protection for are "those who don't need it"? In this respect they seem to be getting their way more and more, because the law is HELPING them do so!!! At what point do we start to recognise them as bogus tradesmen?
Karen Loughran, Scotland

Why not? They use every other means to make sure they don't pay up and claimants lose out! They're just glorified bookies who keep the odds stacked hugely in their favour! Time for Richard Branson to start a fair insurance company I think.
Richard, UK

Insurance companies want to earn more money by playing safe

Urgessa Bedada, Ethiopia

Insurance companies want to earn more money by playing safe. I do not think such tests should be allowed to play into the hands of those who protect themselves against risks but claim to provide insurance for risks.
Urgessa Bedada, Ethiopia

We live in a society where people are judged on their actions and abilities, I believe this should continue. We should never discriminate against anybody because of a perceived weakness in their genetic make-up. If genetic testing was to become routine for a number of genes, the entire concept of pooled risk, on which insurance is based would be undermined. We would create an insurance underclass for the genetically unfortunate.
Andrew MacInnes, UK

This would mean that if you are carrying a baby with the gene for gay, fat or red hair you risk the possibility that you could not get insurance, because your child may get AIDS, heart disease or melanoma later in life. This will mean that people will ultimately abort any babies that have the potential of being slightly different, because the insurance companies will make it prohibitively expensive to bring up a child that has any of these traits.
Michael, USA

The costs to society are far greater than the savings to insurers

Rod Maxwell, Scotland

This is very, very bad. Either it will lead to discrimination and social exclusion of people at risk or the Government will have to provide cover for such individuals - effectively a state subsidy of the insurance industry. The other problem is that the fear of discrimination will prevent individuals at risk from being tested for diseases and receiving appropriate treatment. Genetic testing may appeal to actuaries but the costs to society are far greater than the savings to insurers and those with a clean bill of DNA health.
Rod Maxwell, Scotland

First it was sexual and racial discrimination, now it's genetic discrimination. I wonder if those who are penalising others will tar themselves with the same brush, should they or their loved ones be found to have one of the genetic disorders listed.
Laura J, England

Absolutely not. The market is skewed in favour of insurance companies already, and this will do nothing aside from massively increase their profits while creating an underclass who cannot get any insurance. I can't see the premiums being reduced for people who don't have a predisposition to genetic illnesses, since no possible genetic makeup can protect the owner from being run over by a bus. I wonder if insurers will suddenly find the "prone to forget to lock my car at night" gene to overcharge for?
John B, UK

Would I want to take the test only to be denied insurance which I need to buy my house or protect my family?

Pascal Jacquemain, UK (French)

Insurers in the UK won't insure you against health problems you have already or will charge you more. It seems only logical that this should extend to illnesses that you potentially have because of your genes. But this logic has a drawback. Even if tests were available for a large number of diseases, some of them incurable, would I want to take the test only to be denied insurance which I need to buy my house or protect my family?
Pascal Jacquemain, UK (French)

One major concern is that this will discourage people from having such tests taken due to the fear that it may adversely affect the cost of their insurance. This is very much not in the interests of the health of the nation.
Robert Ennals, England

So what do we do? Do we go get a genetic test to see what we can be insured for? In fact let's go a stage further - why don't we just donate money to the poor insurance industry and not have any cover at all? Afterall surely nobody believes that insurance is for the end user to cover themselves again risk?
Chris, UK