Law Chat
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Attorney Thomas Jurgensen on Legal Implications of Gene Sequencing

June 28, 2000

(CNN) -- Thomas Jurgensen, vice president of technology transfer and general counsel for the Salk Institute, joined Law Chat on Wednesday, June 28, to discuss the legal issues surrounding the sequencing of the human genome. Law Chat is presented by FindLaw. CNN.com provided a typist for Jurgensen. The following is an edited transcript of the chat.

Chat Moderator: Can you begin by offering us an overview of the legal issues surrounding this week's development in gene sequencing?

Tom Jurgensen: I think the primary legal issues relate to the degree of privacy people have in their own genetic code.

What we have now is a general blueprint based upon about five individuals. But in the not too distant future, each of us will have our own blueprint. The issue is "do we have a right to privacy in that?"

A second issue is "what can people do with that information if they can get it?" There, we are thinking about insurers, employers -- people like that. There will be more issues developing over time because this implicates a lot of social issues that have legal ramifications.

One area is testing of fetuses for their profile. That could lead to abortion issues and changing the makeup of children. That is further down the road, though.

Question from zyvex: What can and cannot be patented when it comes to genomics?

Tom Jurgensen: The blueprint that was announced is going to be in the public domain. So the entire sequence is not going to be patented. People will still patent individual genes and the use of individual genes that come out of that.

Chat Moderator: How likely is it that employers will begin to require genetic testing in the future, and would individuals have a right to refuse such testing?

Tom Jurgensen: I think that will come up and I think that is exactly at the heart of some of the legal issues that we will discuss. My opinion is that it should not be a criteria that employers will use to decide whether to employ a person or not. What it gets to is the issue of genetic discrimination. And I don't see that as very different from other types of discriminations that are outlawed, such as sex or race or other things. I think we should be protected from that.

Chat Moderator: You spoke about each person getting his or her blueprint -- medically, how is such a blueprint obtained?

Tom Jurgensen: They can obtain it from a variety of sources, from your blood or saliva. And that is analyzed in a machine called a "sequencer." It sequences your genes. Many people in the pharmaceutical industry are talking about us carrying our own blueprint with us on a microchip embedded in an ID-like card.

Chat Moderator: How great is the potential for error in performing an individual genetic profile?

Tom Jurgensen: I think we are early in the process. So the tendency to have error, I believe, is going to be greater now over the next several years. So there is a risk of mis-sequencing someone's information. So there is always some risk in that.

Chat Moderator: Is the legal community concerned about the law's ability to respond quickly enough to the rapid advancement in medical technology?

Tom Jurgensen: Yes, it is getting started. I know that there has been a bill that they have been trying to get introduced that relates to genetic discrimination. It only affects discrimination in health insurance and discrimination by the federal government in employment. Obviously there are many more areas that will need to be addressed.

Question from CharliGirl-CNN: How will this new information affect life and health insurance?

Tom Jurgensen: That is a concern that was addressed by the bill I mentioned. Insurance underwrites based on risk, and my concern is that insurers will jump to conclusions based on your code and end up denying coverage or charging individuals more. Besides the legal issues, we're not even really technically ready to think about things like that. My concern is that they will jump the gun on using this information.

Question from CharliGirl-CNN: Will this type of sequencing make it easier in criminal cases, to prove without a doubt, that a certain person committed a crime?

Tom Jurgensen: I think it would enhance the current techniques some. But the current level of sophistication is already quite good. Yes it will help some, but it is already satisfactory.

Chat Moderator: How do you see this affecting the public in the next year, the next five years?

Tom Jurgensen: I think there won't be a great deal of effect in the next year. This is still an early rough draft. But if we look out five years and beyond, the benefits are going to come in better diagnosis and the chance to treat many things and cure many things that can't be cured right now.

Chat Moderator: Do you have any final thoughts on this topic?

Tom Jurgensen: I think people should keep abreast of this. Don't hesitate to bring up your concerns to your representatives. My concern is that it could be inadvertently abused. I want people to be aware and proactive.