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Dr. Jeffrey Kahn: ethics and sequencing human genome

June 26, 2000
Web posted at: 5:00 p.m. EDT

(CNN) – The internationally funded Human Genome Project and private company Celera Genomics both announced the sequencing of human genetic code on June 26. Ahead is the process of determining how to put the information to medical use. A host of concerns over genetic discrimination and manipulation, as well as individual privacy, must also be addressed.

Dr. Jeffrey Kahn is director of the Center for Bioethics at the University of Minnesota. His specialty is applied ethics, including ethics and genetics and ethics and public health. Dr. Kahn writes the bi-weekly "Ethics Matters" column for CNN.com. Kahn is the author of "Beyond Consent: Seeking Justice in Research."

Chat Moderator: Thank you for joining us today, Jeffrey Kahn, and welcome.

Jeffrey Kahn: Thanks; good to be here.

Chat Moderator: What do you think will be the first practical application emerging from the sequencing of the human genome?

Jeffrey Kahn: It will spur an explosion of research into genetic mechanisms in health, disease, traits and so on. It's really the beginning of the era of genetic medicine.

Question from Haley-CNN: Dr. Kahn, it is a pleasure to have you join us today. How far are we away from playing Dr. Frankenstein in attempting to create the "perfect person" who is super smart and free of any so-called "genetic inferiorities"? And what are the implications for society if we try playing Dr. Frankenstein?

Jeffrey Kahn: The more genetic information we're able to test for, the more likely we'll be able to at least select certain traits. But there is a big step from identifying genetic traits and actually controlling them. So I think engineering people is a ways off.

Chat Moderator: Do you see the analysis of gene sequencing as helping some of the nature vs. nurture debates?

Jeffrey Kahn: Or it may help the nurture vs. nature debate. My point is that it will shed light on how much of our characteristics are actually controlled by genetics, which may be a little or a lot.

Chat Moderator: Will this information be used to discriminate against people, and how can we prevent that from happening?

Jeffrey Kahn: That's a very good question. There are protections in over half the states that prevent the use of genetic information for discrimination in health insurance. But there are no such protections in life or disability insurance, and it's unclear whether employers could make use of genetic information in hiring and placement decisions. So I'd say we need to focus on federal legislation that outlines protections for genetic information.

Question from Kenect: Mr. Kahn, can you explain to us why so many people are afraid of genetics? There is a great potential for abuse, but don't you think that as a society we can be responsible about this great power?

Jeffrey Kahn: Our history speaks for itself, unfortunately. The memory of World War II hasn't faded that much. I think the good news is that we're talking about these issues prospectively instead of after a horrible story has broken.

Question from Gman: Is medicine the only foreseeable future of genomic work, or maybe something off that beaten path?

Jeffrey Kahn: There is great promise in both animal and agricultural biotech that will come out of genomic research. Imagine pigs whose livers can be transplanted into humans without being rejected, or corn that is not only nutritious but also provides a vaccination when you eat it. These are all possible uses of genomics.

Question from Dianah: Jeffrey Kahn, you mention there are " protections in over half the states that prevent the use of genetic information for discrimination." Can you provide an example of such protections groups?

Jeffrey Kahn: In my own state of Minnesota, health insurers may not use genetic information to make decisions about eligibility, premium setting or exclusions.

Chat Moderator: Do you think the prospects for "designer babies" are realistic and, if so, would you see this as a desirable development?

Jeffrey Kahn: It depends on what you mean by designer babies. To the extent that we can use genetics to detect terrible diseases and eventually treat them, then I think it's a good thing. But if you are thinking about using genetics to either select particular traits in children -- eye color, height, etc. -- or eventually to engineer traits or enhance qualities, then I don't think that's acceptable.

Question from Change: What was the entire cost to decode the human genome and what economic effects/possibilities it may have?

Jeffrey Kahn: I don't know the actual dollar value, but it's in the billions of dollars. But it creates huge amounts of useful information for researchers; that's hard to put a value on.

Chat Moderator: Who owns the information acquired by sequencing the human genome?

Jeffrey Kahn: That's a complicated question. The raw data is available to the public. You can go onto the Web and have a look at it anytime, but it's just strings of code. The more useful applications of genetic information are being patented, when researchers know both the sequence and what it does. Companies like Celera "own" their database by charging subscribers to use powerful search engines to access the publicly available data.

Question from Gman: Does the public need to embrace the Genome Project for further developments/advancements?

Jeffrey Kahn: The Congress allocated many billions of dollars to the Human Genome Project over 15 years so, for the time being, it is well-endowed. But no doubt there will be other research proposed that will require public input to go forward.

Question from Moose: Dr. Kahn, are any people or corporations trying to get patents on certain genes?

Jeffrey Kahn: Yes, absolutely. They are trying to patent the smallest pieces of information that they can. The Patent Office is requiring them to show the function of the particular sequences or it rejects the application. So, if you claim you know the sequence that codes for diabetes, you can patent that. But, if you say you know the code of the first 1,000 base pairs of chromosome 1, that wouldn't be allowed.

Chat Moderator: Do you have any final thoughts to share with us?

Jeffrey Kahn: I think one of the big issues will be how we decide who has access to genetic medicine -- testing, therapies and drugs that are developed. There is the potential that we'll create the genetic haves and have-nots, and that's something we need to work to avoid.

Chat Moderator: Thank you for joining us today!

Jeffrey Kahn: Thanks for having me. I've enjoyed it.

The above is an edited transcript of the News/Health Chat.



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