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Broadcast Saturday 06/09/2003

Who Owns Your Genome?

The human genome has been sequenced and the information holds the key to preventing, curing or giving early warning of many genetic conditions. It also has the potential to create a genetic underclass if this information must be disclosed to employers and insurance companies. So, should this powerful knowledge be used for public good or private profit? Who does own your genome?

Robyn Williams: Today, a Science Show special, Who Owns Your Genome, a topic becoming more and more immediate as your genes and mine become public property, even private property. This is a forum held at the Australian Museum, which featured three main speakers: Sir John Sulston from Cambridge, Kris Barlow-Stewart, a genetic counsellor and Clive Hamilton from the Australia Institute in Canberra. We begin with Sir John Sulston, who for some reason, says that mapping the Human Genome was a small project.

John Sulston: Why I’m say it’s a very small project is that reading it out, although technically a great feat in terms of getting the automation and the machinery and so on, the computing, to work adequately to do it, is just a beginning because understanding it now spreads out into all areas of biology, especially when you consider that we’re not just reading out that code but the code of many other creatures. And it’s by comparing them with one another that we’re going to go forward in part, and in part by doing lots and lots of experiments. But in order to do lots and lots of experiments you’ve got to have access to all of these codes and you’ve got to have very open access really; you can’t sort of choose in advance exactly which one you’re going to take and you know, sort of buy it from somebody and use it separately, you’ve got to have constant access to the whole lot, to browse around and compare what you’re seeing with what’s there in the data bases. And for that reason this international consortium, which was the Human Genome Project, put all its sequence as it went along into the public data bases. One is in Washington in the US, one is in Cambridge in UK and one is in Japan, at Mishima and they all hold the same set of data. It sounds a little bit wasteful until you consider that this is actually very important data and we don’t want to lose it, so it’s a rather good idea to have it scattered around on three continental plates with three different funding systems and all the rest of it. And so these data bases exchange all their data all the time. We’ve got this very secure sort of storage but everybody can come and look at it freely.

And now, what brought the story of The Common Thread into being really was that we had a challenge while we were doing this with a different view of how it should be dealt with, the view from Celera Genomics that data might profitably be gained and profitably exploited, in the sense that it could be kept in a private data base and then there would be an entry fee to go and look at it. In fact, the company was beginning to patent quite large sections of it of file patents on odd sections.

So, we had to make sure that we got our data out and undercut this effort because otherwise it wouldn’t be in the public domain. And I’ve already given one reason why I think it should be in the public domain: it needs to be worked on by many people because the understanding is more difficult than the acquisition of this code. A second reason is that fruits of this endeavour are going to take a long time to come. We’re seeing some fruits right away, right now we’re beginning to look at the variations, the small differences, one part in a thousand by which one person’s copy differs from another copy. So that we can do right away and we can begin to correlate variations with one’s fate in life in terms of sickness and health and all sorts of matters, which maybe useful medically, will be useful medically and are beginning to be so already.

But then going on, we’re using information from the genome to study some things in much more detail, and the particular one that I draw attention to as being immensely important and having a very bright future is cancer treatment, because cancer is a disease of DNA, the tumour growing in you is altered in some or several parts of the DNA, which means that the cells have escaped the normal controls of the body and it just continues to grow uncontrollably. Now, to pin down the precise nature of those changes, those mutations in the tumours that cause that, will allow new drugs to be developed, targeted very specifically, very precisely and will give much better treatment. But actually developing that, both discovering the targets and developing the drugs, is going to be long process, so we’re talking now not about next year, we’re talking about the next couple of decades perhaps when a number of forms of cancer will be treatable.

That’s just to sort of give a positive point about how very valuable this is going to be and there are many, many more things we can talk about, culminating for me in the complete understanding of our bodies and that’s something that will only come over many decades, but having this basis of the complete information to build them is obviously going to be immensely important.

And so I want to come back to saying why we called the book The Common Thread. We called it The Thread because of the thread of DNA but also the thread of ancestry, the fact that we don’t invent our DNA as we go along, it’s something that we hold but it’s been copied through all the generations from the earliest people, the earliest primates, all the way back from 4 billion years ago when our first common ancestor arose on earth. It’s not something that we have created, it’s something that we’ve found, that we’ve discovered and it’s very, very clearly in every sense of the word a common heritage.

So, we have the common thread of ancestry, the common thread of the DNA molecule itself and it’s very clear to me that we should treat this material and this enormous potential equitably. And that, I think, leads us to the most important part of our discussion today I would say, which is to ask ourselves, how can we use this more equitably when so many social and political forces in the world are driving us towards more discrimination and more inequity in society both nationally and globally? I think the developments of biology and the practical developments, the potential for discrimination if we misuse this for example, drive us towards believing that we have to work more for the social good and so although it seems to many at the moment a rather scary prospect of this enormous new knowledge we may get, I hope, I really do believe in fact, as a matter of necessity that it’s actually going to drive us more towards the social good once we’ve all fully considered it. And so it’s that consideration that I hope we shall be doing excitedly and amusingly but actually very importantly. Thank you.

Robyn Williams: Sir John Sulston on Who Owns Your Genome coming from the Australian Museum. Next, someone who’s at the human face of these questions, Kris Barlow Stewart, a genetic counsellor. Kris.

Kris Barlow-Stewart: Thank you very much. I think often my job these days is to give a reality check. There is enormous promise in the future but we do have to deal with what we are experiencing today. So, let me just get you at down to ground level, that genetic conditions are family health problems so using the new genetic technology, or the old technology which is a family history, we can determine that some particular family members are affected by a condition that is running in the family, and when that happens their relatives are at increased risk. I’d like to tell you some stories about some of the families that I deal with, to give you a glimpse into what it means to encounter the genetics technology today.

Take Cathy, Cathy is 32 years old, she’s just been diagnosed with breast cancer, that’s quite young to develop breast cancer and moreover, Cathy’s father’s sister and her grandmother on her father’s side also had breast cancer at a relatively young age. Now, we used to think that breast cancer, a woman’s disease, couldn’t be passed down through the Dad but in fact, we now know that an inherited predisposition to develop breast cancer along with all the other environmental triggers that we still don’t know anything about, despite the advances of the human genome project, can put a daughter of that father at increased risk.

So, Cathy developed breast cancer, she went to the familial cancer service and after some consideration, when all the options were explained to her in genetic counselling, Cathy decided to have the genetic test and she was found to have a faulty gene that predisposed her to breast cancer. Now, all of us have some faulty genes, we’re born with estimates from 4 to 12 different faulty genes. So, we found out the particular faulty gene that she had and that meant that she was predisposed to breast cancer, which she’d already developed, but also predisposed to ovarian cancer, she was now at high risk and so she would need extra screening.

I said before genetics is about families. Cathy spoke about her relatives, she has two sisters, one who’s 28 younger and one who is 34, older. But Cathy said, I haven’t spoken to my sisters and I will not speak to my sisters – we’re talking about families her, families don’t always get on, hey. So the doctor, the genetic counsellor, everyone encouraged Cathy to tall her sisters not only that she had breast cancer but that they were now at increased risk, that they should go to genetic counselling if they wished to know this and of course their right not to know should be equally respected if they make an informed decision about it. But Cathy didn’t tell her sisters.

Two years later, Cathy’s older sister was diagnosed with advanced ovarian cancer and she was unaware that she was at risk and that there might have been something that she could do about it to prevent that coming on.

Now whose responsibility was this? Was it Cathy’s or was it the doctors? Should the doctors have over-ridden Cathy’s confidentiality and rejected Cathy’s right to privacy and warned her relatives? And these are issues that we in Australia and I think everywhere in the world are grappling with; issues that have been highlighted by the Human Genome Project. And in fact there is a lot of concern in our community about discrimination, from employers, from insurers, what is this information going to mean and how is it going to be used?

A few years ago I conducted a national survey of genetic support groups, the people most likely to have experienced genetic discrimination and I got lots of responses and we very carefully honed down the cases that we thought represented genetic discrimination and the reason we got so many responses was because it was anonymous. But the problem is that we couldn’t verify that these families had actually experienced discrimination in insurance and employment. The stories sounded good but we just don’t know exactly what happened in the assessment of their risks.

Some had been refused life insurance, some had been unable to increase the amount of insurance that they needed to have and all of this occurred after they had disclosed the fact that they had had genetic test and that it was positive, or negative in some cases, because that’s the contract that we in Australia have with life insurance companies. Unlike the United States our health insurance is community rated to our health insurance is not being impacted by genetic health information, but life insurance is, but it’s a voluntary contract, and the insurance industry says: we need to know what you know. So if you’ve had a genetic test and you know what it is you have to disclose it. And unlike in the United Kingdom where research findings are exempt from being declared in insurance we have to disclose them. One of the other problems here is that if you have a parent who has had a genetic test result and you fill in an insurance claim, you have to declare your parent’s test result.

Now, one of the concerns that I have now is, is this going to stop family communication, that parents won’t tell their children because if you don’t know the information you don’t have to declare it.

We don’t really know the extent of genetic discrimination in our society. I am just currently working on a research project that’s funded to the end of 2004, to try and get some evidence – was there misunderstanding when the families said that they were being discriminated against on insurance or was it really that they were? And this is not an easy project to do because the concerns about the fears of discrimination are that, for example, people won’t participate in research involving genetics because of their fears that they won’t be able to get insurance or their children won’t be able to get insurance.

My last story is about Jim. Now, Jim has a family history of cardiomyopathy, it affects the heart muscle and Jim’s dad died of a heart attack when Jim’s dad was 45. Now Jim was at 50% risk of having inherited the faulty gene and Jim decided that he would want to know whether he had it or not so he goes along, has genetic counselling, says yes, I want to know and he inherited the faulty gene, which means that he is likely at some time to get this condition if the faulty gene is expressed. Now the problem with genetic disorders is that, even if you have the faulty gene it doesn’t necessarily mean you’re going to express the symptoms. And even if you have the faulty gene and it’s expressed, the symptoms might be mild or they might be severe. So all this mapping of the human genome has actually only taken us somewhere along the path and hasn’t given us the full story. And it may never give us the fully story. But back to Jim.

So, he now has this genetic test information. Who owns it, does Jim have to tell his employer? He’s a school bus driver, his doctor thinks that he should tell his employer because one of the symptoms with this is that he could just have a sudden heart attack and so the children in the bus are therefore at risk. Who has the greatest right to this information; his employer because of public safety or Jim, who doesn’t want to lose his job? And Jim also wants to take out life insurance and income protection, just in case he does have a heart attack, but he’ll have to disclose that test result to the insurance company. And his chances of getting insurance are likely to be severely impacted.

I’d just like to finish with three words: freedom, burden and power. Undoubtedly, there are freedoms that have been generated by this wonderful scientific achievement. People can now make choices that they have never been able to have before; often they’re reassured that they haven’t inherited the faulty gene and the fears that they’ve been living with have now been eliminated. But along with those freedoms come choices, choices that were never experienced by previous generation: to terminate a pregnancy based on the diagnosis of a condition in a 12 week old pregnancy; the choice to have a genetic test and you find that you have not inherited the condition and your brother has – survivor guilt is something that we never expected to find. And of course then, there’s power: power of third parties - who indeed owns our genomes? Thank you.

Robyn Williams: Thanks Kris. Kris Barlow-Stewart. And now an economist, someone who’s studied the conflicts between private interest and the public good – Clive Hamilton.

Clive Hamilton: I’m delighted to be here to comment on this fascinating and compelling book, The Common Thread, and what struck me most was the clash of value systems between the academic researchers of the Human Genome Project and those of the private enterprise venture established by Craig Venter. One group worked for the benefit of humankind and the other worked for the benefit of a few shareholders. One group was determined to be collegial, collaborative and open, the other was intensely competitive, secretive and, it must be said, untrustworthy - profitmongers John refers to them as. One group wanted to provide this vital knowledge to the whole of humanity, the other wanted to privatise, to patent the knowledge so that no one else could use it - a genome gold rush, unless they came and paid for it.

As you wrote, ‘the genome sequence is more than a commodity, it’s the essence of biological heritage, the instruction book for living things’. The only reasonable way of dealing with the human genome sequence is to say that it belongs to us all, it’s the common heritage of humankind.

Well, market values, the sort of values that drove the other mob, market values are fine for markets and private goods, we’d expect to know more, but when these market values penetrate areas of human life where they don’t belong, they corrupt much that is noble in us, for when market values rule, calculation drives out trust, self-centredness displaces mutuality, superficiality prevails over depth and our relationship with others are conditioned by external reward and above all, by money.

When market values prevail playing fair seems to be naïve. Today, when a cricketer walks or when a mountaineer sacrifices reaching the summit to help another, our admiration for them betrays our despair at the usual state to which we have descended.

So let me just comment on some of the other areas of life where market values and economic thinking have corrupted much that’s admirable in us. One of the earliest and most aggressive exponents of this economic imperialism was Garry Becker, the Chicago economist par excellence who, in an article published in one of the economic profession’s most prestigious journals applied the principles of economics and consumer behaviour to what he called ‘the market for marriage’. Garry Becker defined marriage as ‘an arrangement to secure the mutual benefits of ex change between two agents of different endowments’.

In other words, people marry in order to more efficiently produce what he called household commodities including quote, the quality of meals, the quality and quantity of children, prestige, recreation, companionship, love and health status. The rational person he argued, will base any marriage decision on quantifiable costs and benefits, the gain from marriage has to be balanced against the losses including the legal fees and the cost of searching for a mate, in order to determine whether the marriage is worthwhile. Becker went on to analyse the effect of quote: love and caring, on the nature of the equilibrium in the marriage market. To do so he defined love as a quote: non-marketable household commodity, noting that more love between potential partners increases the amount of caring. Why is this valuable? Because this in turn reduces the cost of policing a marriage. Policing of course, he went on, is needed quote: in any partnership or corporation, because it reduces the probability that a mate shirks duties or appropriates more output than is mandated by the equilibrium in a marriage market. (So there’s no need to put a padlock on the fridge if your partner loves you.)

After pages of differential calculus Becker reaches a triumphant conclusion: since love produces more efficient marriages quote: love and caring between two persons increase their chance of being married to each other.

Now what Garry Becker’s wife thought about this isn’t recorded but in 1992 the Royal Swedish Academy of Sciences was sufficiently impressed to award him the Nobel Prize for Economics for this and related work - and apologies to Sir John if this story takes some of the shine off his own Nobel Prize.

Let me give another illustration of the way in which economic thinking can corrupt moral values. In the early 1990s the Chief Economist at the World Bank was a man named Laurence Sommers, he was later appointed by President Clinton as the Secretary of the US Treasury. At the time, the World Bank was taking an intense interest in global environmental problems and was proffering advice to developing countries. In a leaked internal memo Laurence Sommers argued that rich countries should ship their toxic wastes to poor countries, writing that quote: the economic logic behind dumping a load of toxic waste in the lowest wage country is impeccable and that underpopulated countries in Africa are vastly underpolluted. How do we know this? Because in poor countries, Dr Sommers wrote, the foregone wages as a result of illness and early death are so much less than in rich countries.

In other words, because they’re poorer the life of an African is worth much less than the life of an American and it has to be conceded that economically speaking, Sommers logic is impeccable, it’s just that we shouldn’t think about these things economically. So, we gasp at Laurence Sommers chutzpah, but what’s the moral difference between dumping our toxic wastes in Africa and refusing, as the Howard government does, to ratify the Kyoto Protocol and reduce our greenhouse gases unless poor countries do likewise.

In the lead up to the Kyoto Conference in 1997, small island states in the Pacific expressed their alarm at scientific projections indicating that several of them would be flooded by rising seas. The Australian government’s chief advisor on climate change told a conference in London that it might be more efficient to evacuate small island states subject to inundation rather than require industrialised countries like Australia to reduce their greenhouse gas emissions.

So then, certain areas of life should never be turned over to market values. Let’s keep the private markets where they belong but where there is a public good involved - and I can’t think of a better example than the Human Genome Project, when these public goods are at stake, let us keep to an ethical humanity and that includes the genetic map of humankind.

So, I think we all owe a huge debt to John Sulston and his collaborators. Through an extraordinary dedication to the past, often at tremendous personal cost, they have rescued the instruction book for human life from being captured by privateers. John Sulston and his collaborators have ensured that the instruction book for human life will be read freely for the indefinite future by all of humankind, not only those who can pay. Thank you.

John Sulston: About the insurance. Britain has not made a moratorium about all life insurance, it’s made a moratorium up to a certain threshold. We understand very well that if you insure your life or you want to insure your life for say, $100 million then you’re really gambling with the insurance company, this is a lot of money. But what we feel - and whether or not we can make the moratorium remain I don’t know, it’s run for about two years and it’s got three years to run, but what we feel is that it is part of the requirement to be a full citizen, to be able to ensure sufficiently to protect a mortgage, not a huge mortgage but an average one, to protect your dependents and therefore to protect your income in some way, and so that takes you up to a threshold. And it’s exactly the same idea as not allowing people in one’s society to starve because they are out of work or not allowing them to fail to have health care because they don’t have sufficient income. It’s an insurance has now come and it’s probably a new development really over the last century, gradually.

Kris Barlow-Stewart: That’s what I would have liked to have happened in Australia. There’s just been the completion of a Federal Government enquiry, the report is on the Australian Law Reform Commission’s website; it’s 1200 pages long, a long read, but they have maintained the status quo. Geneticists like myself proposed a system like the UK but that was not recommended by the Australian Law Reform Commission. What we have now is what has been recommended to continue, and my concern about insurance is that the science is so new I do not think that there is enough statistical or relevant evidence to be using these tests in the assessment of risk for insurance just yet. I mean, perhaps in 5 years when the moratorium perhaps is finished, but we are faced in Australia with using this information now and I think it is impacting on families.

Robyn Williams: Paul Willis.

Paul Willis: Just a quick comment and then a question. The quick comment to Clive. I have a T-shirt that says Economic Rationalism Isn’t and when you wear it you always find the economic rationalists; they’re the ones that come up to you and say, Isn’t what?

Sir John, it’s a couple of years ago now isn’t it, that both Nature and Science came out with the same paper promising to show us the human genome, and I remember running down to the library with great expectations expecting to rip open this volume that could only have been stored at Hogwarts because of its size, with ATCCGTAAC ad infinitum through the whole volume. Instead I found what I thought was a relatively short paper with a load of graphs on it. How is that information of the genome condensed so that it can be put into one paper?

John Sulston: The paper is just the gossip column relating to the human genome. The actual human genome sits on these computers, it does take 3000 million characters to write it fully out, that’s an awful lot of telephone directories - I always forget how many but it’s supposed to be a stack up to the ceiling or something, and they just don’t do it that way. You access it via computer searching for keywords as it were in the system; it’s like using the yellow pages you know, there’s a variety of systems you can use. But a very important part about the public project as opposed to the private project is that all of it has always been available, you can do whatever you like with it; you can use the yellow page tools, you can also have the whole lot at any time and you can manipulate it as you wish.

Robyn Williams: Next question please.

Question: My genetic material cannot be repossessed, it will continue to express itself, I don’t have to pay a royalty to use it. I could come up with some sort of descriptive method instead of using CATG and come up consequently with different names for the compounds that are in there. If they’re claiming a patent is the list of CATG whatever repeated, isn’t that more of a copyright? What do they own?

John Sulston: I agree with you totally. I mean, my argument is exactly the same thing, we talk about this in the book. But curiously people seem to be very mystified by this. The European directive on this says, so long as the gene is inside your body, then it’s not patentable, but as soon as you get it out and sort of grow it in a bacterium or something, then it is. And I say, well, that’s like taking one of our books which is in hard back, writing it out in paperback and then saying that’s yours. So it’s exactly the same point: that it’s the information we’re interested in, we don’t care about the chemistry.

So how do they get around it? The battle for us over the last 5 years almost up to the present was to ensure that that particular form, just the strings, could not be patented in any way because we’ve got them out there. What happens now is that people get rather broad patents by listing all the things they might possibly do with this bit of DNA, you know, you’ll just cover all versions of them in the patent. This is what Myriad Genetics has done, and what they’ve listed is a couple of dozen different things they can do with it and that thing has gone through. So it’s not only all the testing that they control but also all the possible research leading to practical therapies, all of which obviously would in the end be commercial drug sales or something and so are controlled by the company. So I see that as a trick, I think that some effectively through the patent system as it now stands, people are allowed to ring fence what should be a matter of a common good and effectively turn it into a patentable item by listing all the utilities.

Now the right thing to do is to proceed by narrowing the patent and saying no, the utility has to be what you can actually do with it right now; your particular test you can patent you know, the bits of plastic and reagent that’s fine, but you should not be in a position to patent all competing tests. After all we want people to innovate, we want to invent around, to use it in different ways and certainly to develop cures in the long run and those should not be touched by the person who just knows how to test the gene in one particular way.

So I think that’s the future but how we persuade against obviously the force of people who are benefiting from the patents, you know the companies and their lawyers and obviously the shareholders, which tend to include all of us, we’ve got to persuade people to swing back and make these much narrower patents.

Kris Barlow-Stewart: The BRCA1 gene is one of the genes that is involved in predisposition to breast cancer that I was talking about, and Cathy for instance is able to have this test because it’s offered free through our Public Health system, but Myriad Genetics who hold the patent have actually licensed a company called GTG Technologies in Australia to implement their patent and do the testing. Now GTG Technologies may or may not implement that patent, but if they do they have exclusive licence to test it so nobody else can actually test that in Australia, and the charge will be around $US2500.

So now we have inequity of access. So there is currently another enquiry being conducted by the Australian Law Reform Commission into gene patenting in Australia, they’re calling for submissions now, if you have anything to say you can write you can contact them through their website because I think it’s an issue that we in Australia need to have a voice on and express our disquiet at what might happen.

John Sulston: I mean, the cases are going forward now in Canada and in France and Germany I think, but in both France and Canada litigation is happening with Myriad, so I do urge Australians to stand up and join those other countries in opposing this iniquitous abuse of the patent system.

Question: Given that particularly in Australia and in all World Trade Organisation countries, the relevant treaty governing intellectual property rights gives governments the opportunity to refuse patents in relation to health care, to diagnostic and therapeutic measures and that basically the reason why these patents are getting through is because market thinking has so severely infiltrated every sector of government. What do you think are viable means for people to illustrate to their governments that health care shouldn’t be a market driven sector, that it’s really a captive environment, that people will always need health care.

Clive Hamilton: The argument for privatising knowledge for example through patents is based on the belief that unless people can generate a profit from it then they won’t explore, they won’t investigate, they won’t innovate and so on, and it struck me reading this book that it’s a brilliant refutation of that argument. Here you had a publicly funded project which not only was intensely driven by the desire to discover but actually did it better than the well-funded private enterprise venture. And the interesting thing was that the funding for the public venture came not so much from the government, although in the US a lot of it came from the government, but in Britain it came from the third sector, from the philanthropic trust, the Wellcome Trust. And if you look at what was motivating the researchers in the Human Genome Project, they were intensely competitive but they weren’t motivated by making a lot of money, they were motivated by professional pride, they were motivated by a desire to do a good job, to contribute to humanity and the idea that people will only work hard and innovate and attempt great things if they are going to make dollars out of it seems to me really quite perverse and refuted by this very process we’ve seen.

Kris Barlow-Stewart: The arguments of course that the biotechnology companies put up is that they invest millions of dollars to forward this information that might be publicly available to develop treatments, pharmacogenetics, proteomics, they’re the source of next buzz words for industry, and they have to get some of that back, but I see that there has to be some compromise between balancing that and enabling access to health care, because I don’t think patents are going to go away.

Robyn Williams: Next question.

Question: Is it not the case that this patenting is actually stopping research into the reliability of the breast cancer gene test as a predictive tool?

Kris Barlow-Stewart: Yes, I mean there is great concern about the limitations on research. We will only find out more by being able to have more people undergo the genetic testing and look at their history about what happens with them, so what does that genetic test result mean and perhaps, you know, how can we extract the genetic information better and analyse it differently. The concern is that one of the things that Myriad does is it reads the gene from beginning to end so the story comes out about what that message says in terms of breast cancer development.

Just to clarify things, we all have the so-called breast cancer gene. I think scientists have a lot to answer for in their naming of genes. The breast cancer gene is not a breast cancer gene, it’s only a breast cancer gene when it’s faulty, it’s actually tumour suppressor gene – but that’s another story.

Anyway, one of the problems in reading it from beginning to end is that there will be differences in the information and until we can follow up exactly what people have with the different expressions of that gene, we’re not going to know what it means. So yes, I am very concerned about the limitations on research.

John Sulston: I would back that up and I was just sort of reflecting you were saying quite rightly that the BRCA genes are tumour suppressor genes, I would say that Myriad is a research suppressor organisation because its patent is a mutation of lots of people doing that. I know that very well because when I was travelling in Canada in the autumn it was just when Canada had been hit by Myriad’s threat to sue and British Columbia had actually chucked in the towel right away and decided they couldn’t afford to be sued, but Alberta where I was travelling as well as Ontario had continued testing. And I went to the geno typing lab in Alberta where they were doing this and they were using a test method that’s quite different from Myriads and costs something like a tenth as much. Now Myriad deride this method and say, oh home brew technology, useless. But curiously this actually picks up certain sorts of mutations that the Myriad test doesn’t, although Myriad are perfectly correct in saying that occasionally their tests will do better than other one. So the point is, why I say that they’re a research suppressor is because they are a competition suppressor and that’s the way the wrong kind of patent works. I’ll just come back to re-emphasise what I was saying. I’m not at all against the patenting system - well I am a bit - but I’m particularly not against it when it is properly protecting and licensing inventions. The whole idea of patents is they should be a social contract between the inventor and society, they offer the opportunity for other inventors to come around the side and make a competing invention, to make a better mousetrap as we always say in the old metaphor; to make a better mobile phone, a better car, a better television, these are the way patents are supposed to work, they don’t work at all when we use them to block off a whole area by the thing being too broad. OK? So I think it’s very clear that although Myriad is a particularly bad case because of its high licence fee, in general this patenting of genes will do us a disservice by blocking competing research and although it may seem to be a good idea for raising venture capital to provide the research effort, in fact, in the long run I think it’s a very bad idea because it prevents competition.

Robyn Williams: And the next question comes up here in the sky.

Question: A few years ago in a well publicised case in Northern California a fellow had a cancerous spleen, which I think was removed, and then the oncologist subsequently developed an interesting cell line from it and patented it and the fellow who had the original cancer then made a claim. He said, well it was his cancer and therefore he should have some value from the economic development. Would you agree that once he has the cancer removed he sort of forfeited any financial value from the cell line?

John Sulston: I think it’s a good example and actually broadening that out tremendously, we’re seeing exactly the same thing in the question of collecting genetic information from various isolated populations in the world has run in tremendous problems because people have become aware that when their blood samples are collected they’re probably going to be used if possible to make somebody in a rich country rich. And so people are sort of drawing back and they are refusing permission and then we get all sorts of things like informed consent coming in and what should we be doing. I just think this is bollocks, you know. What we’re doing is to drive goodwill out of the window by this excessive regard for property. My attitude is, and I think it’s the attitude of a great many people, it’s certainly was the attitude of the families who contributed to the discovery of a lot of these genes by providing their family information and samples, their attitude was that they were happy to help provided that the research was used to the good of all, and it’s only now, where we’re getting this excessive level of protectionism and litigation coming in that people are starting to make a fuss and saying well, if there’s all this wealth flowing around, billions of dollars being made out of my tumour line in this case, or my blood sample if you’re the case of a South American Indian, then I want some of it too, and I support them. But I think it would be far, far better if we said nobody owns these things, in the same way as I say nobody owns the genome, nobody owns their blood sample in a sense, because they share them with everybody else.

Kris Barlow-Stewart: A real life example of some of the problems is that in the United States there was research going on, I think it was Miami Children’s Hospital, it was a fairly rare condition that was common in the Jewish community and a lot of families from all over the world had contributed blood samples to have DNA extracted to enable the gene involved to be identified and a genetic test developed, and the hospital took out the patent on the gene. Disquiet occurred amongst the community of families affected by this condition, because even though they had contributed their DNA to the finding of the gene they were now being charged a lot of money to have the test. So they took it to court and in fact were able to get the patent over-ridden and it is now shared between the hospital and the parents. And exactly what John was saying, because access is being blocked, there’s no longer public good. In Australia, if you give a blood sample, if you have some tumour taken out and it’s kept by the laboratory, that sample belongs to the hospital or the laboratory, you no longer own it and that’s by law. So when we talk about our blood sample we don’t have any say in it.

Question: I actually lecture in intellectual property at UTS and I have to say whenever I lecture in patents, whenever we come to the point about patenting medical treatments there is always a lot of disquiet among the class. And the leading case in the area is a case called Rescare v Anaesthetic Supplies and the judges there say, Look this is too hard, this should be handled by parliament. And of course the parliament isn’t going to do anything so it just goes to the courts. But I think one of the issues that has to be borne in mind is that a patent does only last for 20 years, so after the 20 years everyone does have access. But secondly, I think a lot of the problems have been caused by the way the patent system is administered in this country and a lot of the time, a lot of the patents that you’ve described are not true patents, and if it was ever tested in court they would be revoked and indeed, most patents which go to court are actually revoked. The problem is that there is not enough funding given to the patent office to actually thoroughly test whether or not a patent is properly a patent. They’re presumed to be patentable because it just costs too much money to actually go through the process of checking and then what happens is that no one ever contests it, and everyone knows that patent suits are the most expensive litigation to run. And indeed, if a lot of the patents were contested they would not be what they have to be, which is novel and they would not be an invention. But until we have a system where patents are actually thoroughly tested when you apply for them, and there is some sort of funding for patent litigation to properly contest a patent, we’re going to have these problems. The problem is that once you get a patent you’re in a very strong position to hold onto that patent.

Clive Hamilton: Well, 20 years is a long time. As John Maynard Keynes said: In the long run, we’re all dead - particularly if you have breast cancer and you can’t get access to the tests or the remedy because you’re not wealthy enough. But I think a lot of our argument is about where boundaries should be drawn, what’s the distinction between a public good and a private good and none of us dispute that there are both, it’s just where the boundaries should be drawn. And the importance of drawing it is that where there are public goods involved ethical values are the ones that ought to predominate and where it’s demonstrably and is accepted to be a private good, then it’s legitimate for economic or market values to prevail.

Kris Barlow-Stewart: One of the current problems with the human genome is that echoing what John said, it’s being utilised more in the developed countries and very little in the underdeveloped countries. I’m fairly pessimistic too about the next 20 years unless our leaders embrace the impact of this technology and pass laws and regulate to ensure that there is maximising of the benefits and minimising of the harms. I would hope to see greater utilisation of this technology to ensure clean water, to ensure that we can eliminate malaria for instance, but I don’t think that’s going to happen unless there is will to do so.

Clive Hamilton: Well, in 20 years time my greatest fear is that the military will own the human genome, but I’d like to echo Kris’s arguments, increased economic growth and higher incomes in rich countries will not increase our levels of social well being. In the United States as in Australia incomes per person have increased three or four times in real terms in the last 50 years and yet if you look at meters of well being or happiness they haven’t increased at all and in many measure have actually declines. So you have to ask yourself whether devoting enormous potentialities of genetics to increasing the growth rate of rich countries will have any impact at all on our collective well being. And so, like Kris, I’d like to suggest that the ownership and the benefits of these extraordinary developments should be devoted predominately to those people who can benefit from it most and that is poor people in developing countries.

Robyn Williams: If we take say ten or twenty years, let’s say twenty years time, how do you think we might answer this question: who owns the genome? Will we be as concerned?

John Sulston: Well, biology ten to twenty years ago was worth nothing, it was a thing for eccentric vicars and ivory tower scientists like myself. What’s happened quite suddenly is that it’s become of commercial value although the perception is much larger than the reality right now. And so what’s happened is that we’re going through a Klondike phase and it’s got all the errors and problems and tribulations that go with that. I’m not sure twenty years is quite long enough, I mean the statement that patents only last for twenty years is literally true for a single patent but this process which company lawyers of course are awfully good at, evergreening things, so you somehow transmute and start the clock rolling again as you get close to your end, you know you just make something that’s slightly different is the real problem, so I think we shouldn’t underestimate it. On the other hand, certainly viewed largely, whether it’s going to be 20 years or 40 years I think we shall work through this phase. However, I would not focus too much on biology but focus as I’ve done from time to time on society as a whole. I feel very, very pessimistic about the possibility of future survival of our species on earth if we do not fix and move back towards a better social equilibrium. Richer societies are moving rapidly towards a set up which is more Dickensian than the mid part of the 20th Century and I think that this is giving rise to increasing unrest both within nations and between them and I see the things we’re dealing with tonight, the biological discrimination of the problems of this as just a microcosm of the greater need to make our societies world wide more equitable, thereby making the world not only humane but prosperous and also secure, because the roots of the disquiet which we hear about, the war on terrorism and all of this nonsense, is not really to do with guns, it’s to do in the end with people being unequal and we’ve got to move forward that way otherwise we shan’t survive.

Robyn Williams: Sir John Sulston ending our Science Show forum, Who Owns your Genome. It came from the Australian Museum in Sydney. John Sulston won the Nobel Prize for Medicine in 2002. Kris Barlow-Stewart is a genetic counsellor and Clive Hamilton is at the Australia Institute in Canberra. Next week, the Prime Minister’s Science Prize, I’m Robyn Williams.

Guests on this program:

Sir John Sulston

Dr Clive Hamilton
Executive Director, Australia Institute

Kristine Barlow-Stewart
NSW Genetics Education Program
Royal North Shore Hospital
St Leonards NSW 2065

Further information:

Australian Law Reform Commission
Release of Issues Paper 27:
Gene Patenting and Human Health

Australian Law Reform Commission
Essentially Yours:The Protection of
Human Genetic Information in Australia

Polly Rickard

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