Genetic Discrimination

Tuesday 27 November 2001 12:00AM (view full episode)

How would you feel about a life-insurer or a bank - having a look at your DNA profile - before deciding whether your worth doing busines with?

Is there anything wrong with people entering the market place - waving their genetic credentials to passing finance-companies and employers?

Doesn't information help everyone make better choices? Or, are we creating a genetic underclass?


Damien Carrick: This week on The Law Report, genetic discrimination.

Should employers, life insurers and others have access to your genetic profile, to help them determine whether they want anything to do with you?

Lawyer, David Keayes.

David Keayes: What we really need to do is look beyond simply matters of statistical fairness and consider the implications of being denied insurance. So if a person with Huntingdon's disease is denied insurance, quite often the implications are profound. Just as an example, there's a particular individual whose case I documented, who is middle-aged, and she had a family history of Huntingdon's disease again, which is a disease that develops as you grow older and you become demented, and she had a genetic test and it was positive. Now subsequently, at a latter time, she decided she wanted to buy a house, you know, everyone wants to buy a house, she had the money, was employed full time, and she applied for a home loan. And part of that home loan was that she had a form of life insurance. And she applied for life insurance as we all do when we apply for a home loan, and she was denied that because she had a gene-positive test for Huntingdon's disease, and of course the result is that she couldn't get the home loan. Now fortunately her partner bailed her out in that instance, but here we see an example of how genetic testing can be used to isolate a person and exclude them, not only from insurance, but from other opportunities as well.

Woman: There seems to be a tendency to seize on genetic information and treat it as if it were definitive, to treat it as if it were spelling out the person's fate, and not perhaps being sensitive to the fact that some sorts of information may be of that nature, but not all types of genetic information.

Woman: One day they are doing their job perfectly well; they have a genetic test, and the next day they are considered to be somehow incapable of doing the job that they have done yesterday.

Man: People are essentially forced to discover things about themselves that they don't want to know.

Man: I guess we're considering how much use would be made of genetic information, going into the future. Our conclusion was that there would be a lot more use. Increasingly common illnesses are being related to genetic causes, or genetic influences.

Damien Carrick: Some of the views you'll hear in today's program, as well as theme music from the film Gattica, which is set in a world where every opportunity is determined by a person's DNA profile.

Genetic discrimination is, however, no longer just the stuff of science fiction movies. Lawyer David Keayes and colleague Dr Kristine Barlow Stewart documented 48 cases of genetic discrimination, in employment, health care and insurance, in their ground-breaking research, published last year.

According to David Keayes, we're only just beginning to discover the possibilities of genetic testing.

David Keayes: Well because your DNA is the plan or the blueprint, you can generate an enormous amount of information by looking at someone or an organism's DNA. Currently in Australia there are some 400 genetic tests, and you can probe someone's DNA and discover whether they're going to suffer a particular disease or whether they're likely to suffer a particular disease, and perhaps one day you could also probe behavioural traits. We know, for instance, there are genetic linkages to alcoholism, depression, schizophrenia, so perhaps one day genetic tests will also develop for these kinds of disorders.

Damien Carrick: Lawyer and researcher, David Keayes who we'll hear more from later in the program.

The Australian Law Reform Commission has just announced an inquiry into the use of genetic information. Last week in Melbourne, the ALRC held its first Information Meeting to gauge the views of the public and interested parties, about what kind of regulatory framework we need.

Of course insurance companies have had information about a person's family tree for years. So what's the real difference between a family history of heart disease and a genetic thumb-print?

David Weisbrot is the President of the Australian Law Reform Commission.

David Weisbrot: As a community I think we don't like the idea that everybody is barcoded or microchipped and fully tested from birth, and that everybody knows everything about us, and we have a strong cultural predisposition, if not a genetic one, to its privacy and individuality, and individual decision making. You remember the fate of the Australia Card about 15 years or so back, genetic testing tells you everything about the person, not only about the person, but also about their family and about their ancestors and about their children. So it's a potentially very powerful technology. There's also the case though that we shouldn't overly emphasise genetic information as the be-all and end-all. A person is not simply a checklist of their genes. There's a complex interplay among genes, which we're only just beginning to understand, and of course we know that there's a very complex interaction between genes and the environment. So you can have a terrific genetic checklist but if your hobby is diving out of aeroplanes or driving at very high speed, or other things, then of course that's going to be a factor, your other general lifestyle, your working conditions, your access to health care, all of those, and choices you make in life, luck, all of those sorts of things are very instrumental in how you develop as a person and how your health is maintained.

Damien Carrick: Currently, what's the state of play, legally speaking, when it comes to genetic information being used by, say, employers and insurers?

David Weisbrot: Under the common law and under statutes and practice for a long time, the rule has been that people must disclose material facts to the insurer. In the area of genetic information, insurance companies for a very long time have been taking family medical history as part of the application process, and so in a sense they've been using genetic information, but in a more indirect form. In recent times, IFSA which is the peak national body that represents I think 90%-odd of the volume of insurance work in Australia, their policy says they will not pressure people to take a test, and they will not even indirectly encourage people to take genetic tests, by giving them discounts on policies. However if someone has taken a genetic test, then they are required under the normal laws to disclose that to their insurer.

Damien Carrick: What's the effect of the status quo on people's decision whether to be or not to be tested?

David Weisbrot: If you have someone who wants to volunteer for medical research, or participate in a broad genetic screening program of the sort that they have for say in the Jewish community for tay sachs disease, or in other communities for sicklecell anemia, or haemochromotosis, which is occurring now in Melbourne, IFSA got together with the Royal Children's Hospital in Melbourne in sponsoring the widespread haemochromotosis screening, and say that people participating in this screening program, because it's an undeniable public good, they won't be penalised in insurance terms. So we're hoping that the industry will look at some of these issues about not discouraging people from getting tests themselves for diagnosis purposes, or participating in medical research or broad screening programs.

Damien Carrick: David Weisbrot, President of the Australian Law Reform Commission.

Lynne Ralph is the CEO of the Investment and Financial Services Association, IFSA. She says at the moment, information from genetic tests isn't being widely used by insurers. But she's adamant, the current rule requiring people to disclose all health information, including genetic information if they have it, protects everyone's interests.

Lynne Ralph: I don't think we really want people to go out, and I think it will be a long, long time before insurers will ask people to go have genetic tests, because it is a serious test to have and it has implications not just for you, but also for your family members. But I think it is still fair to say that if you know, and you have information about your health and about the fact that you may have, or may be going to get quite serious illness, it's akin to knowing that you've gotten home and your house is on fire, and then you run down the street and try and get some insurance. It's only fair that you tell the insurance company, and it's only fair to all the other policyholders who effectively will be picking up the cost of your claim, if you tell the insurance company at the time of the application about your health.

I have to say I think this is the sort of brave new world scare tactics that also went on if you think about it, in the early days of in vitro fertilisation, something we now all come to accept in the community. Life insurance companies only make money if they insure you, and we'd like to insure as many people as possible, in fact we wish more people would decide to take out life insurance than do. Currently only about 30%, 35% of Australians elect to voluntarily take out some form of life insurance. And so it's not in our interests, or in anybody's for us to start refusing people. Just because people have gene tests, don't mean that suddenly a greater proportion of the community are going to be ill, right? It's still an early technology and people don't really know what it's going to mean for them or for their lives.

Damien Carrick: Lynne Ralph, CEO of the Investment and Financial Services Association.


Damien Carrick: In a moment we'll hear more about the study of David Keayes and Dr Kristine Barlow Stewart, which identified a number of cases where genetic information was used to deny people employment or access to goods and services.

But according to Association Professor Margaret Otlawski of the University of Tasmania, there are situations where genetic information is an appropriate basis on which to discriminate in the workplace.

Margaret Otlawski: Genetic testing can be useful to identify people who have genetic susceptibility to workplace hazards. There may be particular chemicals in the workplace, or other hazards, and there may be a link between genetic predisposition and then certain diseases being triggered by exposure to those chemicals. Now it would seem to me that an employer not only should be encouraged, but almost would have a duty to ensure if these tests are available, that they are offered. There's another area as well, where genetic tests could play a role, and that is to perhaps detect in presently healthy people, who as a result of a genetic predisposition, may or will develop a condition that through its onset, may put others at risk. For example, if they operate heavy machinery or fly a plane, and the development of the condition is such that it couldn't be detected through other means, such as regular performance monitoring, if in other words, genetic testing is going to be the only way to identify people who may put others at risk, then there I think would also be an argument for those very specific categories. We're talking about a pretty exceptional category, but I wouldn't like to dismiss it as being irrelevant, because there too I think, on occupational health and safety grounds, there might be some scope for allowing genetic testing in circumstances where you can find a test for a condition that meets all of those prerequisites. But aside from that, I mean I guess what we really need to avoid is large scale testing where the motive is simply to secure as healthy a workforce as possible, to try and work out well who's going to take the least sick leave. I mean clearly, you know, employers might have an interest in doing that, but that in itself isn't a good enough justification for requiring people to undergo testing. I mean for one thing it's a very invasive procedure, in the sense it's information that's very sensitive. People may not want to know if they're going to have future onset conditions, so it's very important we don't put people in a situation where they feel compelled to take tests, especially in the employment sphere, where you might say OK, they've consented, but is consent really going to be voluntary if it's going to be a precondition for acquiring a position, or promotion or some other advantage in employment.

Damien Carrick: Associate Professor Margaret Otlawski.

Dr Kristine Barlow Stewart is the Director of the New South Wales Genetics Information Unit at the Royal North Shore Hospital. Together with David Keayes she published pioneering research on how genetic test information is being used.

The study, which surveyed 700 people, found discrimination in a wide range of areas, including insurance, access to health services, and employment.

Kristine Barlow Stewart: In three cases where people had had a predictive test for Huntingdon's disease, one man's employment was actually terminated after he disclosed his results to his employer. In another case two people were demoted to lighter duties. Now I must emphasise that these people are completely well. Their condition will not onset for ten to 15 years later.

Damien Carrick: Do we know about the reason for the firing or the demotion, or that to reduce subsequent superannuation payments down the track, or was a decision being made about their ability to do the job?

Kristine Barlow Stewart: Well the report that people said was the decision was being made about their ability to do the job, which is of course a clear misunderstanding of what the genetic test result means. But the problem with anonymous surveys is that we can't go back and check on all of this, which is why much more research needs to be conducted in this area, so that we can work out where the problems are, and hopefully try and at least, if it is a basis of misunderstanding, correct that misunderstanding.

Damien Carrick: I understand that there were also a number of survey results which pointed to discrimination in the provision of health care. Can you tell me about those?

Kristine Barlow Stewart: Well there are actually two cases. One I think which illustrates the dilemmas that professionals are dealing with in this area. A couple wanted to have IVF because the woman had a genetic test and found that she had inherited a faulty gene, which meant that she would develop a fairly rare form of Alzheimer's disease, and they wanted to have a baby who did not inherit this faulty gene. So they wanted the embryo tested before it was implanted into the pregnancy. Now they could have had testing in pregnancy, but they didn't wish to go down that route, they didn't wish to terminate a pregnancy where the child would have perhaps 40 years of good life, so they chose using IVF, a technique we call pre-implantation genetic diagnosis. At least that's what they wanted to do. But the IVF group refused to offer her IVF. So this group had actually made a decision about treatment of her, based on her predisposition to Alzheimer's disease.

Damien Carrick: And do you think at the end of the day that it was an incorrect decision by the doctors?

Kristine Barlow Stewart: I think that everyone should have access to a technology if it is available, on the same level playing field. We are all predisposed to something, we actually just aren't able to test for everything right now. I think if we start putting walls in place here, we are really playing with the autonomy of people to make life choices for themselves.

Damien Carrick: I understand that insurance was an area which kept on coming up in the survey results, or in the questionnaire results. Tell me about some of the people who reported discrimination in that area.

Kristine Barlow Stewart: For example, Jim (we'll just call him Jim) was a middle-aged man; he went along to his GP and he was found to have raised levels of iron in his blood. Now there is a condition that is called haemochromotosis that is quite common in people of European ancestry. So in a lot of Australians. Jim was found to have a fault in that gene, which meant that he was likely to develop the symptoms due to excessive iron overload, which means the iron deposits in the kidney, the brain, other organs, the heart, and of course can cause severe damage. But Jim was not affected in any way, he simply had raised iron levels. He was advised to give blood regularly and his iron levels returned to normal. He wanted to take out income protection insurance, he wasn't able to because of the genetic test, which he freely disclosed on his insurance application. What was incredibly bizarre was that when he applied for travel insurance, his premium was loaded four times on his travel insurance. The thing with genetics is it's a family issue, and because it's quite common and they have children, Jim's wife decided that she should get a genetic test to see whether she and Jim had the faulty gene, if they passed it on to one of their children, then their children could be at risk for also developing haemochromotosis. And in fact, one of their children refused to have this genetic test because she said, 'Well if I have it, my insurance is likely to be impacted, so there's no way I'm going to do this, and I'm going to become a blood donor instead.'

Damien Carrick: So really what happened here was that somebody who may need treatment, may need proper medical attention and proper medical advice, has made a decision not to be genetically tested for haemochromotosis, even though both parents are carriers, because of the potential for discrimination in insurance, or perhaps even in employment down the track.

Kristine Barlow Stewart: That's what's really worrying about these results. We must say that this was an anonymous survey, so I can't go back and check with this family. But it's an area that we in the profession have been greatly concerned about, because with this particular problem, there is something fairly easy that you can do about it. You can become a blood donor. But if this was the same for breast cancer susceptibility, or bowel cancer susceptibility, where access to the surveillance and screening that you need if you are predisposed at higher risk, isn't as easy as just becoming a blood donor, and we are concerned that people may be making these sorts of decisions based on their concerns about insurance, or as you say, future employment.

Damien Carrick: Dr Kristine Barlow Stewart, Director of the New South Wales Genetics Information Unit.


Vincent: I now belong to a new underclass, no longer determined by social status or the colour of your skin.

Man: Welcome to Gattica, gentlemen.

Vincent: We now have discrimination down to a science.

Man: All right, take your -

Damien Carrick: The character Vincent in the film Gattica, whose employment prospects are curtailed by his DNA profile.

Leaving aside Hollywood's embellishments, lawyer David Keayes says the unregulated use of genetic testing leaves wide open a real risk of creating 'a genetic underclass'.

David Keayes: What genetic testing allows you to do is to isolate those people who are at a higher risk, and exclude them. And if they're denied insurance and as a result they can't get a life insurance and because they can't get life insurance they can't buy a home, then you are at real risk of creating this form of underclass. And of course then if their employer wants this kind of information and their employer discriminates against them, they haven't got a job or a house or a lot of opportunity, and of course because genetic information is passed from one generation to the next, their children then suffer the same fate. And I think we should also remember that the reason we have insurance is to share risk. The very origins of insurance were Venetian sailors who decided it was much better to pool the risk. And what genetic testing really does is it undermines that risk sharing in insurance.

Damien Carrick: Couldn't the argument be put that collective notion of risk sharing is something for say, societies to determine as a whole in terms of the provision of public health insurance, but if we're talking about other forms of insurance which are left to the private sector, if you're leaving it in the hands of private corporations who I guess have responsibilities to their shareholders and what have you, that risk sharing argument perhaps doesn't hold as much water?

David Keayes: Well perhaps I could give you an example. It's illegal under the Racial Discrimination Act to discriminate against people of Aboriginal descent in insurance. And the statistics are quite horrifying and it's perhaps indicting on our society that people of indigenous origins in Australia suffer much greater health problems and they live for a much shorter period of time. But nonetheless, insurers can't discriminate against them, and here we have an example where equality has been deemed more important than insurers making packetloads of money. So I'd argue that the same thing should be applied here.

Damien Carrick: Lawyer and researcher, David Keayes.

So is the Australian Law Reform Commission canvassing the possibility of a general prohibition on the use of genetic information by insurers, employers and others? David Weisbrot again.

David Weisbrot: Well that's a possibility, that's certainly one of the issues we've raised in our Issues Paper, and it's being looked at elsewhere. A couple of years ago, Natasha Stott-Despoja had a Bill before parliament which didn't get through the committee stage, that was specific to genetic privacy and discrimination. In Europe and in some States of the US, and in the UK, there were either moratoriums on the use of genetic information by insurers, or in some cases there were outright bans or there were modifications, of how the insurance company can use that information. So for example, in the UK at the moment I believe that on policies that are under a certain amount, I think it's 500,000 pounds, for life insurance policies, and 300,000 pounds in respect of any other insurance policy, the insurers will not use or cannot use genetic testing. If you're asking for a very high coverage though, then you are under the normal rules. So there are a whole range of possibilities here, and we are opening up all of this for community debate. We haven't come to any conclusion yet about where we would fall on that issue.

Damien Carrick: The Australian Law Reform Commission's David Weisbrot.

Well, what do the number crunchers say? Alan Doble is the Chair of the Institute of Actuaries Working Group on Genetics. He isn't a supporter of either a general prohibition or a UK-style system.

Alan Doble: The fact that a small policy has different underwriting standards than a big policy is a matter of commercial reality at the moment already. You don't want to do the same amount of testing for a $100,000 policy as you would for a $1-million policy of someone of the same age. So that's one of the possibilities that needs to be examined. That's something that the insurance industry generally speaking, hasn't supported at this stage. But I guess one of the things that will come out of the consultation process is to go to gauge the level of viewing in the community on that.

Damien Carrick: Now from the perspective of an actuary, couldn't an argument be put that if all people offering insurance don't have access to genetic information, then the risks associated with different people, with different genetic profiles, will be evenly spread, and that would be just as good an outcome for the insurance industry?

Alan Doble: It works in some areas, particularly where you've got semi-compulsory insurance or a fixed pricing structure, for example health insurance, although the danger there is that people who are healthy will see the rate as being too expensive and drop out. People who are sick will see it as cheap and take more of it, and you get a vicious spiral of the claims going up and therefore the premiums having to go up, and that causes more of the healthy lives to drop out, and so forth. So you may find the same effect in insurance if you did that in life insurance. So I can see it has some attractions on the surface, but I think probably would prove to be not very practical in the long run.

Damien Carrick: People do raise concerns about the creation of a genetic underclass, people who can't get insurance, people who might have problems getting employment, people who might have problems getting bank loans because they don't have life insurance; do you see that as being a potential risk?

Alan Doble: It's certainly a question that needs very careful thinking about. On the other hand you don't want to create a genetic superclass either, that people with a genetic illness are treated more favourably than people with, for example, have had an accident, say in a car, and therefore have some residual injuries from that, or people that have caught an infectious disease who also will have a different health profile.

Damien Carrick: Actuary, Alan Doble.


Woman: Neurological conditions, 60% probability; manic depression, 42% probability; attention deficit disorder, 89% probability; heart disorder, 99% probability; early fatal potential, life expectancy, 30.2 years.

Damien Carrick: David Weisbrot, have you seen the film Gattica, which explores some of these issues?

David Weisbrot: Yes, and I very much liked it. I guess it's the modern generation view of the Aldous Huxley novel 'Brave New World', so we come in cycles about the idea of gen-X and about the influence of genetics in our lives, but I guess we've just got to be a bit careful not to totally overweight those, and to use that information intelligently, and to see it in perspective, which includes environmental and other factors.

Damien Carrick: Can you envisage genetic testing also being used in areas apart from employment and insurance, say for the purposes of immigration, to prove somebody's ethnicity or their family relationship or indeed their identity, whether they've been previously deported from the country and have come back assuming a different identity?

David Weisbrot: There's some anecdotal evidence that the Department of Immigration is looking at using genetic testing for a number of things. I think establishing ethnicity would be very problematic, we're not really capable of doing that at this stage, and I'm not sure we really want to do that, and whether it would run foul of racial discrimination laws and so on I think is also a problem. But it certainly would help for individual identification, so you may have a problematic situation where someone says they're a relation of a person who's sponsoring them in Australia, but there's no other documentary evidence, this would be one way of doing that. You could do it also for medical purposes, there may be some value in genetic testing in that area. So yes, as you said, there are some possible, I think positive uses, or at least permissible uses. There are some other areas where we would be much more concerned about it.

Damien Carrick: David Weisbrot, President of the Australian Law Reform Commission, speculating about some of the future uses of genetic information.

That's it for the program. Thanks to producer Debra McCoy, and technical producer this week, Darren McKenzie.


David Weisbrot
President of the Australian Law Reform Commission
Dr Kristine Barlow-Stewart
Director of the NSW Genetics Information Unit - Royal North Shore Hospital
David Keayes
Lawyer and Researcher
Associate Professor Margaret Otlawski
University of Tasmania
Alan Doble
Australian Institute of Actuaries
Lynne Ralph
CEO Investment and Financial Services Association


Damien Carrick
Debra McCoy