Dr. Jeffery Kahn discusses gene mapping
April 7, 2000
Web posted at: 4:00 p.m. EDT
(CNN) – With the completion of the human genome map fast approaching, controversy on how to use the information grows. The United States and Great Britain recently pushed for all information to be available to the public free and advocated private patents only be available on individual techniques or discoveries relating to the gene sequencing work. Concerns over genetic discrimination have prompted new legislation and worries about insurance coverage.
Dr. Jeffery Kahn, Director of the Center for Bioethics at the University of Minnesota and CNN.com "Ethics Matters" columnist, joined CNN for a Health chat on the issues surrounding the mapping of the human genome on Friday, April 7, 2000. Dr. Kahn participated in the discussion by telephone. CNN.com provided a typist. The following is an edited transcript of that chat.
Chat Moderator: Welcome to our discussion, Dr. Jeffery Kahn.
Dr. Jeff Kahn: Thanks. I'm happy to be here.
Chat Moderator: Can you outline the issues in the genetic sequencing debate?
Dr. Jeff Kahn: The issues seem to center around who owns the data, the public or the private companies, and what will be done with the information that is created.
Question from Moose: Where are we on the ethics of sequencing?
Dr. Jeff Kahn: I think the big debate is over who controls access to sequencing information, since NIH has an effort parallel to that of Celera. Celera charges for subscriptions to their service, while the government offers access for free.
The second set of issues is what will be done with the health information created by sequencing data, but that will be a future issue.
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Question from Allen: Dr. Jeff Kahn, do you think the public has proper understanding on the significance of the Celera work, as it seems that the media is helping to push their stock to a new high?
Dr. Jeff Kahn: No, I don't think the public understands the significance of Celera's work. They are creating a sort of blueprint for the human genome, but it's really just raw information. The real use will be what other researchers and companies do with the info to create tests, drugs, and gene therapies. So the big breakthroughs haven't really happened yet.
Question from CathCNN: Being that private researchers are doing the studies, how ethical are the studies? What do you think are the medical and social implications of sequencing the human genome?
Dr. Jeff Kahn: The public-private distinction is where much of the debate has been in human gene sequencing. If private companies create the data, do they have exclusive rights to it, or should it be more widely available for all researchers to use? The companies want control and proprietary rights, while governments -- ours, UK, Japan -- want shared information. So the basic question is can people/companies own genes?
Question from Sprite: What do we hope to learn/accomplish through gene sequencing?
Dr. Jeff Kahn: Gene sequencing is like learning the phone numbers for everyone in the world, but we don't really know which number goes to which person--we don't know what all of the gene sequence actually means to health, disease, and other characteristics of humans. So this is very important beginning information that will allow the next phase: functional genetics, or genomics, to unravel what genes do.
Chat Moderator: Isn't there a danger that finding out too much about our genes will leave us all open to "gene discrimination" from health insurers, for example?
Dr. Jeff Kahn: There is concern that we don't have adequate protection from discrimination against individuals based on genetic information by insurers -- mostly life and disability, since health insurance anti-discrimination laws are more common now -- or employers. That's why the federal government has been talking about anti-discrimination laws to protect people from misuse of genetic information.
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Question from CathCNN: What sort of safeguards, if any, should be put in place to ensure that this information is not misused?
Dr. Jeff Kahn: Federal law has been proposed, but not enacted. President Clinton signed an executive order that bars the federal government from engaging in genetic discrimination in hiring and firing practices, and now, more than half the states have anti-discrimination laws protecting health insurance benefits from being denied or reduced based on genetic information. But that doesn't include other kinds of insurance -- life and disability -- and we don't know whether employment rights are protected since that has not yet been tested in courts.
Question from JimL: Dr. Kahn, messing with human DNA makes people understandably nervous. What would the effect on science be if the government were to say that it's off limits? Can science be authoritarian and still be science?
Dr. Jeff Kahn: There are many examples of science and medicine changing our nature. Think of organ transplantation or even basic things like antibiotic use. So first, I think we need to ask whether genetic medicine is different?
Second, there are examples of our government banning the use of federal dollars for certain kinds of research, for instance, on human embryos. The bans are usually based on contentious moral issues, but they very much set back science. So I think the best approach is for science to consider the ethical and social implications of their work and establish rules and boundaries so that government doesn't have to.
Question from Golden: Dr. Kahn, should the federal government step in and enact laws to protect the rights of those who may be considered genetically inferior?
Dr. Jeff Kahn: Good question. We may already have such a law in the Americans with Disabilities Act, though that needs to be tested in the courts. And it may turn out that we're all "genetically defective" once we understand more about genetics, so the playing field will be more level.
Question from Moose: Dr. Kahn, should companies be allowed to patent the genes they discover?
Dr. Jeff Kahn: That's a great question, and is being hotly debated right now. I think the answer depends on whether the company has identified something with unique properties and for which they understand the function and can describe it. If so, then it may be appropriate to patent. If not, as is happening more and more with companies trying to patent sequencing as they're identified without any sense of their function, then I believe that shouldn't be allowed.
Question from JimL: Dr. Kahn, thank you for your answer. I agree. But isn't there a distinction between science, discovery, and technology, application? Can the government say, "No, you cannot look there," without destroying science? Shouldn’t the government be hands off when it comes to discovery, but maybe justified in regulating its applications?
Dr. Jeff Kahn: I think that's a fine way to put the distinction, partly because we can't ever predict all the uses to which basic science will eventually be put. Take the atomic bomb, for instance. Scientists who were working on atomic physics couldn't have foreseen all the implications and applications of their work. So basic science should have less regulation than it's application.
Question from Moose: Even if they know the function and can describe it, they are just describing something we all have, the gene. How can some company patent what we all possess?
Dr. Jeff Kahn: That's a fair point. The problem is that if we don't allow patenting at some level, we won't have the incentive for research and development. Remember that part of the deal you make when you patent something is that you fully disclose your "secret," so if you don't allow patents, which are time-restricted licenses, then people may not take on research or may keep their discoveries/inventions secret. So it's a balance.
Question from Golden: Dr. Kahn, how far in the future would genetic testing on infants and inmate populations be stored in a national database, such as the FBI now keeps on criminals? And do you think it should be legal for companies to use this technology for screening purposes?
Dr. Jeff Kahn: I don't think the government has any plans to create huge databases, and if they did have such a plan, there would be lots of debates about why not to do it. However, I can foresee companies requiring employees, new and existing, to undergo genetic testing, particularly to assess workplace risk, say to a toxic substance. And that will create new problems of discrimination. Also, having your genetic information available doesn't have to always be a bad thing. It may help make sure you get the most effective drugs, right medical treatment, etc., in a quicker and more efficient or even lifesaving way.
Chat Moderator: Any final thoughts for our audience?
Dr. Jeff Kahn: These have all been great questions, and I'd only say stay tuned to see what's next in the world of genetics.
Chat Moderator: Thank you for joining us, Dr. Jeffery Kahn.
Dr. Jeff Kahn: Thanks for having me. It's always a pleasure to be here.
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