Do insurance companies have a right to our DNA?

Do insurance companies have a right to our DNA?

by Dr. Hsien-Hsien Lei
Posted June 9, 2007 in DNA Testing, DNA and Disease, DNA and the Law, DNA in General, Polls About DNA

insurance salesman 1The US may soon be outlawing the use of genetic information to determine insurance eligibility but the debate still rages over at BMJ where biomedical ethics professor Richard Ashcroft supports the principles of the Genetic Information Nondiscrimination Act (GINA) while professor Søren Holm does not. The UK currently has a moratorium on the use of genetic information for insurance underwriting but insurance carriers want to change this starting next year.

The question: Should genetic information be disclosed to insurers?

Prof. Ashcroft says “no” on the basis of unfair discrimination via potential misinterpretations of genetic information. He also argues that it’s a social injustice to punish those who’ve had the “ill luck” to inherit genetic mutations predisposing them to disease. (Of course, all of us carry genetic mutations predisposing us to disease and eventually, this will cease to be an issue.) The argument is that individuals with the bad luck to have disease-causing mutations deserve insurance even more because that’s what insurance is for – covering accidents.

Prof. Holm says “yes” to allow insurance companies access to genetic information because genetic information is no different from other data, such as pre-existing medical conditions or family history. He says that it is unfair to ask insurance companies to operate without a complete medical history since they need to be cost effective. (Although plenty of people withhold critical information precisely because they fear their premiums will skyrocket or they will be denied insurance completely.)

I say “no” to making genetic information widely available to insurers because information on my genes is not just about me. My genetic profile can give information about family members as well, especially my parents, siblings, and children.

Knowing the gene variant you carry could make it possible to infer those carried by your relatives as well. This situation is particularly clear-cut for diseases that are caused by a single dominant gene with 100% penetrance (the presence of the disease gene always causes the disease). Huntington’s disease is one example. If a currently healthy person tests positive for the gene causing Huntington’s disease, it is easy to figure out that the gene was inherited from the parent with the positive family history. This parent’s positive status can then easily be inferred from the child’s positive result.

What’s worse, asking for genetic information for one purpose can cause problems in other ways. Family turmoil ensues if the parent had not wanted to know if s/he carried the disease gene, preferring instead to take life day-by-day never knowing if or when the disease might strike. And what about when testing can reveal secrets about family relationships that would have never been known before? Fathers, mothers and children, or sisters and brothers may turn out not be biologically related or perhaps related more closely than previously thought.

How would you answer the question? Take the poll below:


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Comment by Christina Subscribed to comments via email

I say a big “hell no.” Insurance is nothing but a pocket liner for people that have nothing at stake in your medical care (or your home burning down, or your car repairs, ect…). It is the biggest rip off of the century. Down with insurance companies, up with normal prices for services rendered.

Comment by Hsien

Yes. When did it become ok to charge any price or order any service just because insurance would pick it up?!

Comment by NA

Professors Holm’s reasoning is weak. He says that genetic information is no different then other information but does not explain why genetic information is no different then other information. So why would our genetic information be the same as other information, and why would it be different? Reasons why they are the same: the data is gathered by tests that show if you have a disease/disorder that needs treatment. This is no different then getting a CT done to show you have a brain tumor. The reasons why they are different: if you are born with a genetic condition (be it chromosomally, biochemical, or genetic), you can be denied insurance coverage…thus no coverage for needed treatment. Why would an insurance company put you under a policy when you will cost more money then the company can make of you? That is basic economics. However, it is ethically incorrect to deny health coverage to a person because they were born with a genetic condition. Moreover, legally, an insurance company will no longer have the legal right to deny health coverage once the Non-Discrimination Bill is signed into law. I think employers have a stronger legal stance for knowing a persons genetic information then an insurance company does, but it is still unethical to deny a person a job based on their genetic information….even though a person in better health might be a better fit for a certain position. You don’t want a president who has a bad heart condition or a mental disorder (a president needs to be mentally strong- I’m talking about intelligence).

The underpinning of Professor Ashcroft’s reasoning is a very basic and a strong argument. Sometimes the most basic argument is the strongest.

My personal answer is no!

Comment by Hsien

Thanks for sharing your thoughts with us, NA. It’ll be a sad day when our genes determine what jobs we get. Even screening for pre-existing medical conditions would mean the exclusion of people with high potential. Speaking of presidents, we’ve had many in the US and other countries who’ve had serious diseases yet contributed positively to history.

Comment by NA

In a somewhat non-related note, I need to express my opinion about something on a website that I know gets a lot of traffic. With genetic testing gaining a strong hold in medical care, we will be seeing more and more people offering genetic testing and interpreting the information (family history and test results) that are not trained to perform these very complex objectives. Many physicians will start offering genetic testing and telling a patient they have this type of cancer based on the genetic test (without the patient seeing a genetics expert..i.e, genetic counselor). This could result in errors for patients that need to be seen by experts to know if they need the testing done, what management should be given (non-directive of course), and what the risk of recurrence is and whether the disorder they have is actually a result of their genetic material. For example, how many non-trained genetic professionals will be able to tell when a couple with no previous family history of a genetic condition that has two children affected with the same genetic condition tell if the family history shows an autosomal recessive or autosmomal dominate with one of the parents being a germinal mosaic? Would the average physician even understand what the example means that I just gave?

So if patients are diagnosed with a genetic condition based on a genetic test and a family history was done, if the family history interpretation is incorrect, this will result in MAJOR ERRONEOUS RISK CALCULATIONS FOR FUTURE OFFSPRING. If insurance companies were able to use your genetic information and an error occurs in the example I provided, then a person could get denied health coverage, or taken off a certain policy because they are high risk when in fact they are at low risk.

Comment by Hsien

It’s true that not all the supposed “experts” are actually trained in genetics. I think Dr. Murphy of can probably speak more to that.

As for misinterpretation of results, I would hope that companies or people involved would double and triple check.

Comment by nin_ers

en Argentina, eso jamas, pero jamas! va a pasar, porque a niade le interesa.
Eso es demaciado adelantado me parece :P

Comment by Hsien

nin_ers! My Spanish really isn’t that good. Translation, por favor?

Comment by Mary Emma Allen

From the layman’s viewpoint, and a personal viewpoint, I’d say, NO. I’d want to know, too, more about how the insurance companies are going to use this information.

Comment by Hsien

However the insurance companies use genetic info, I’m assuming that we’ll suffer more from having “bad” gene variants than gain having from “good” ones. Although I’d love to be proven wrong!


[...] the Eye On DNA article, Do Insurance Companies Have a Right to Your DNA?, Professor Richard Ashcroft and Professor Søren Holm debate the issue. Category : [...]

Comment by NA


Sorry about this post. I was not able to send the article I found today at the library I’m at. So this is the only way I can get the link to you.

I think you might find this to be an interesting read:

Once you get the article, please delete this post as it does not fit the purpose of this thread. Thanks!

Trackback by InsureBlog Subscribed to comments via email

Much ado about (not much)…

I’m also unconvinced that it’s any kind of problem: there seems to be a lot of fear-mongering on the issue in Dr Lei’s post (although, to be fair, it’s mostly in the comments section, by folks who are woefuly ignorant of the underwriting process). …


[...] Stern at InsureBlog educates us about genes and insurance underwriting. He thinks there’s nothing to get up in arms about. I admit to being rather ignorant about [...]


[...] “Should genetic information be disclosed to insurance companies?” The U.S. and the U.K. seem to be taking opposite perspectives. What do you think? Hsien’s taking a poll at Eye on DNA. Whether you’re a genetics professional or genetics enthusiast, read her post and weigh-in. [...]


[...] of a DNA database in Arizona to store DNA data on criminals. They’re worried about privacy, insurance coverage, and civil rights [...]


[...] privacy is an issue involving government regulations, health insurance, and societal attitudes. But it is also an issue that affects families. None of us hold all the [...]

Comment by ramunas

Definitely NO. Genetic tests are different from simple biochemical test – it has a long term implication and influences ALL family members. I remind my patients that they are not oblidged to disclose their test result (eg BRCA mutation)- they are oblidged to provide only a family history for life insurance companies.

Comment by Hsien

It’s definitely a slippery slope because even a family history reveals information about people not directly involved in individual healthcare. I think that as we learn more about our personal genetic make-up, we’ll be less inclined to make a deal out of it since everyone will have a set of mutations.


[...] June, BMJ debated the use of genetic information to determine insurance eligibility. I, along with other readers, sided with those who believe that [...]

Comment by Alex Subscribed to comments via email

just wondering, how and where are these misinterpretations of DNA being made?

Comment by Alex Subscribed to comments via email

not sure if comment was added cant find
where/how are these misinterpretations of DNA made .. very interesting


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