More and more genetic defects are being discovered these days before birth and after through DNA genetic identification. Insurance companies have interest in the results when they are requested to consider insuring the subject or close relatives. Are the results of these studies any more confidential or less necessary than the companies usual requests for information about the health of the subject or family? A visitor to these pages wrote me the following question:
Should insurance companies have the right to request the result of genetic tests?
Here is the question:
As a person who has had genetic testing and is now in the midst of a battle with my insurance company, I feel that they have NO RIGHT to know about my test results. As long as I pay my monthly premiums, my co-pays and follow every little nit-picky thing they require (which I have done), I feel it's none of their business what my genetic status is. As one of your reponders said, their business is not to know personal stuff about me, but to provide insurance. That's it. I don't feel it's ethical for them to have access to such personal information because historically they have and will continue to abuse it. They are a necessary evil, but they need to be regulated more strongly and need to start caring more about the patient as an individual instead of just making a profit off someone else's back.
Personally I think that Insurance Companies abuse the power of holding information about us or any one. Everyone should have the right to have there own privacy no matter what testing or whatever they are doing. Also if docters don't respect the right that there patients have and not ask them or tell them that certain companies can with hold there information, I find that quite unethical..Thanks
There are two sides on the story. Insurance companies can get information in 2 different ways. They can ask you to undergo a genetic test, or they can ask you to reveal the results of a former genetic test.
In Belgium, the legislation is very strict: insurers are prohibited to ask questions about former gentic test or in the same way you are nit obliged to reveal those tests and on the other hand they cannot imopose a genetic test on you. This is indeed a very strict regulation and has the disadvantage of the socalled selfselection or antiselection. This means that people who know that they are seriously ill and will die in a matter of years, are going to underwrite a lifeinsurance for a astronomous amount of money. As they don't have to reveal this 'genetic' information, they are considered as healthy and normal insurance takers. This will lead to a great loss for the insurance company and eventually they will have to raise their premiums. As a result, many 'healthy' insurance takers will leave this company and try to underwrite a polis in a company (eg: in a different country) who does make a difference in premium rates on the basis of genetic information because the law doesn't forbid it. This is a streat with no end. In the Netherlands, they have a prohibition on the use of genetic information as long as the insured amount of the life insurance polis does not surmount 300.000 f. (this is about 100.000£ or 150.000$). Above this amount, insurane companies are allowed to ask for genetic information. In both countries, there is a strict prohibition on the use of genetic tests. Also the Council of Europe tends to this point of view. Allowing genetic tests would infringe a persons' life too much and wouldn't be proportionate to the goal. It seems that the UK and the USA do not consider these considerations as relevant and would allow the use of genetic tests. In this way, they implicitely consider economic purposes more important than the dignity of a human being.
Warm greetings, Tom Gevers, Law student, University of Antwerp, Belgium
If we assume that eventually, in some form, the insurance will receive the rights to test results as discussed previously, then it is fair to assume the next step will be genetic modification during pregnancy. If you accept that there will be a group of uninsurables, then there will be a stronger case for genetic modification to alleviate the potential gentic defect that will plague the child once born. Although there has been much discussion regarding the ethics of playing god in this way, the arguement in favour may be strengthened if insurance companies get their way. The prospect of human cloning is abhorent to many, but would they agree with modification for the benefit of the person? Bearing in mind the acceptence of cosmetic surgery of varying types, the right of an individual to change themselves as they see fit may be tested to the limit when a parent has the choice to change their unborn child, to preserve their insurability.
The Economist magazine had a good observation on this topic: life and health insurance companies must finally get access to genetic information because if they don't, it means the end of (private) insurance. Since the persons themselves will know their genetic risk, those who knew that they were "condemned to die" would take out enormous policies on themselves, thus eventually busting the companies. While many if not most countries have national health insurance programs, none have public life insurance - to prevent these from going bankrupt, national legislatures will be forced to grant equal access to genetic information.
I think that eventually, genetic information will be very valuable to insurance companies in providing the most accurate premiums for its clients. Some say that it wouldn't be fair to use genetic information for insurance because no one has any control over their genetics. On the other hand, insurance companies have been using things like age, sex, and medical history for years. No one has any control over these either, but their use is widely accepted. However, at present, the field of genetics is not yet advanced enough to provide useful information for insurance companies. Let's say someone tested positive for Huntington Disease. In this case, it would be impractical for insurance companies to use this information. No one knows what the age of onset of HD will be (which could vary greatly) as well as the relative severity the person will experience. This information would be paramount in using genetics for insurance purposes. Now let's say someone was tested positive for a predisposition to a certain disease--let's say heart disease. Again, no one knows at what age the person will begin to have extra medical expenses, or if the person will even develop the disease. Environmental factors such as diet, smoking habits, exercise, etc. would need to taken into consideration when determining the person's risk. Until scientists can understand exactly how these environmental factors interact with the human genome, insurance companies would not be justified in using genetic screening information to set premiums.
in response to mr. hardy
i recently read your email to doktor mo on the internet about whether or not insurance companies should be able to have access to genetic information. i think you are incorrect in your opinion. first of all, insurance companies and many businesses are in the practice of kicking aside ethical issues if in return they can make a profit, so any attempt to argue on the side of ethics, is almost pointless with big business and may be pointless with you as well, i dont know. however, one should take into consideration the fact that many people are affected negatively by such neglect. insurance companies are already denying insurance to those who really need it. the original idea of insurance is to spread the risk around evenly so that those who need it wouldnt have to spend the rest of their lives paying for an operation or other medical care. so your supposition that it is unfair for those not in as much risk to pay for those who are at a greater risk is inherently incorrect. although insurance companies may tell you otherwise, (and you may believe it) this is the reason why the public wants insurance. and by the way who exactly is it unfair for? the one in need of medical care or the one who doesnt need it. i pray often and thank God that I was one of the lucky ones that was able to stay unharmed that day. prayers may be my only option right now seeing as how i am a college student who cant afford to purchase insurance for my wife and I because it costs much more than would even benefit. i will be the first one to tell you that i think the health care system stinks, not because insurance companies cant afford to cover everyone, but because they think they cant afford to cover everyone. the ones making the decisions actually can afford to cover more than they do. well i guess the poor guy may actually not be able to cover everyone, he could still be in debt on his frequently used yacht. for all i know sir you may be that person i am referring to. smooth sailing
I believe that the insurance companies don't need to know the results. its none of their business. their business is just to provide us with insurance and that's it.
I would be interested to know the views held regarding health insurance for individuals who choose to pursue a lifestyle that has known deleterious affects on health e.g. smoking, excessive drinking, poor diet, lack of physical exercise. Perhaps insurance companies should seek to obtain higher premiums from those individuals who elect to follow a path that has clearly been shown to lead to health related problems i.e. deliberate self-injury. We cannot choose the gene pool we get yet we can choose to maintain our bodies in as healthy a condition as possible. If we choose not to, we should not expect others to pay for our health care. Perhaps in the future we will be expected choose out partners based upon their gene complement and, by analogy, be penalised if we do not seek to limit the chances of passing on deleterious genes !
Dr. Jo Thompson-Hehir, Higher Research Officer, Clatterbridge Cancer Research Trust, J. K. Douglas Laboratories, Clatterbridge Hospital, Bebington, Wirral, CH63 4JY
I know this is out of the line with standard thinking, but I belive that insurance companies should have the right to the results of a genetic test of the person rwquesting insurance. First of all, an insurance company is a business and like any good business it tries to make the most profit it can. An insurance company makes it's money by reciving regulary paid premeiums from it's customers. The amount of these preminums is based on the risk each of these customers have to being injured, sick, etc. This fact has never changed since the concept first came about and with our ablity now to analyze the genetic code, there is still no reason that concept should change. Simply put, a person at a higher risk, through their fault or not, should pay more for insurence. Another point is that it is not fair to the rest of us to pay the same price for insurence as those at a higher risk. If they do, it will turn out that those who pay premiums for years and never get sick will end up paying for those who have diseases already programmed into them. And if this happens, our insurence companies will turn into what is essenslly medical welfare companies.
I don't think that insurance companies have any right to look at the genetics of a child. Just because a prson doesn't have a perfect child doesn't mean that they don't have right to have insurance. God's given gift was for us to have children, no child is perfect, even when they are born. they could be the most healthy child when they are born and in two years end up with cancer. I am a twin and when I was born both my sister and I were as healthy as could be. In two years she was diagnosed with cancer. Now, if the insurance companies checked her genetics when she was in my mothers womb there would be no sign of cancer. Now do you think that's fair for a person that shows that they are Downs Syndrome?
This question is ridiculous. What is this Social Darwinism. Genetic predisposition does not mean that the gene will express itself. However most insurance companies do not know that bit of information. Also genetic predispostion does not have anything to do with an individuals current health. For example, if the gene for obestiy is present, this person may develop obesity, in respect this person may have a slew of problems as a result; heart attack, knee surgery, hematology studies for poor circulation, psychiatric problems due to social stigma. OR, this person may develop a healthy respect for excersice and nutrition. Rather than insurance companies worrying about possible " later-on " health problems, how about providing education so specific problems do not develop.
Please note I am using my husband's e-mail address.
The technology will soon exist to enable a persons entire genotype to be produced and it is very important that the ethical implications/questions arising from this technology be considered at a personal, national and global level.
Many of us may argue the individual case for rights to privacy over our genetic code however the power of the multi-national companies will almost certaimly reign on this issue. In Australia insurance companies already have the right to tests results for blood tests, x-rays and electrocardiographs in order to assess the patients suitability prior to a life insurance policy being drawn up. Companies will argue that a patients genotype is just another health test and that they should have the right to reduce their liablities in the case of health insurance risks.
It seems quite likely that insurance companies will eventually reserve the rights to genotypes on all prospective clients. This would create the untenable situation of a group of 'uninsurable' high risk citizens and who will care for them?? The health system in its present state certainly cannot. It seems likely that the rights of the vulnerable and already disadvantaged minority will be eroded again.
Maintaining the privacy of a genotype in the future will be a difficult task. A request for a genetic screen to be performed on a patient will be the mandate of any primary physician concerned about their patient's long-term health. It will be cheap and an extremely effective tool. Keeping this data, undoubtedly electronically stored, away from the eyes of those who have a great deal to gain by this knowledge will be impossible in the long run. The single most secure fortress of knowledge in the known US government and possibly the world, the Pentagon, is routinely invaded electronically. I doubt that an HMO or managed care organization, or an underfunded in-hospital laboratory, with its eye on the bottom line, will be making great investments in protecting this information to the point it would be inviolable. In a long-term scenario, there is not going to me a great solution with the current system.(i.e.- Insurance Companies battling for the genetically and observably healthiest coverage base) We can go with it, in the hope of committing the least evil possible. The idea being that the benefit of the whole still outweighs the personal cost to those who surely become the victim of the technology and their own genotype. The other solution as I see it, is to put the information and the entity paying for the coverage under the same roof. As bad as it sounds, this can only fall in the hands of the US government. It sounds like a nightmare, but it is truly an inevitable consequence of the time we live in. Life will change and our ideas of privacy will change. We may live longer, healthier lives, but as a society this is the cost we will pay.
I feel that insurance companies have no right to your genotype if it doesn't affect your motor skills or brain function. If a genetic triplet does contain a serious mutation, such as the pattern of systic fibrosis or Huntington's, then the insurance company has a right to know. Other people that are joined to an insurance agency that accept people with these diseases, or one's like it, then they will be paying the price as well. unless you do a case by case study of this "touchy" situation, there is no ethical standpoint to be reached.
--Joy, age 14
No, insurance companies should have no right to know your genetic status. Yes, they are in the business to make a buck, but the premise of insurance is that life is a gamble and one should have insurance in case something happens. While they may "count cards" to discern an overall pattern, no dealer in Vegas is ever allowed to see the actual cards someone else holds. If insurance companies find the lack of precise genetic information about each insuree to be an unacceptable risk, they should get out of the business and stop blocking national health care proposals.
It is conceivable to me that insurance companies "may" have a right to such information...much as I hate to say it. Insurance Companies are in the risk business and construct their premiums and customer base in acciordance with risk factors. One can develop life tables (i.e., risk tables) based on experiences with such demographic factors as age and sex. One can refine morbidity and mortality tables with SES information. It is quite conceivable to me, that with enough experience, genetic data could help refine, or even substitute for, some of the current data used to determine morbidity and mortality risk -and who is to say that the current variables are any more ethical than the genetic ones. Is genetic information on a higher privacy level than one's blood pressure levels, or one's medical history -both of which may be currently employed in deciding who may be insured? I don't think so.
Nathaniel H. Siegel, Purchase College, SUNY
This is a GOOD question, with no clear answers. However, from the insurance companies perspective, it is not an ethical question.
This similar debate has appeared during the mid-eighties when the AIDS epidemic was gaining it's momentum. Insurance companies regulurly screened for the HIV virus and subsequently refused coverage to those that tested positive.
Insurance companies, in America, are for-profit organizations. As such, those companies who make the most money are those that insure the best risks, offer the lowest premiums, and therefore have the most customers. Some bad risks are absorbed through hospital and physician discounts and through a tax-free status that some companies receive. However, it is in the companies best interests that genetic screening be done, not necessarily the public's.
This leads to the question: What is insurance for? For the insurance company, it is a means to a profit under the guise of social service. For the individual, it is protection by sharing risks. Meaning, it is one of many was of reducing the inequalities of life (a la Rawls).
To allow insurance companies to reguest genetic testing is one thing. To allow those companies to refuse coverage - or to skyrocket the premium to unpayable levels, thus effectively denying coverage - seems unacceptable.
As an example, we can now accurately test for the gene for Huntington's disease. Suppose a person applies for insurance. Unknowingly, s/he is a carrier of the disease. Some people do not want to know if they are a carrier of some diseases that have, at present, no known cure. (A popular example is Nancy Wexler). People are not always prepared for such profound news; and it is hard to judge one's reaction in such a situation. News of this nature might be an intolerable burden for some people. Is it fair to subject people to this information if they choose to remain ignorant of it?
Cofidentiality is a good thing because it provides a person with a certain amount of control over his/her life. This is what we normally cal a "right to privacy". The courts already rule that a person cannot be legally required to test for organ compatibility for another relative - even when the life of the relative is at stake. These rulings should keep insurance companies from reguiring relatives to test for genetic diseases.
Only when some great public good was at stake should the results of genetic testing be revealed. As a result, people might have to pay slightly higher premiums on their insurance, but all will have the insurance that their right to privacy and confidentiality will remain intact.