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Teens talk genes.

Sometimes we appreciate the "gifts" we inherit from our parents and grandparents--like a knack for science, our looks, musical talent. But occasionally things are passed down in families that can be hard to live with--like a gene, a segment of DNA (see p. 12), that causes a serious illness.

Some of these gene defects block the production of proteins that allow the body to function properly. Others cause cells to multiply rapidly and lead to cancer. So far, researchers have identified more than 3,200 genetic defects that may lead to fatal diseases. For some genetic illnesses, like Huntington's disease (a nerve disorder), having a defective gene means that you will definitely get sick (perhaps later in life). For others, the genetic defect may never make you ill.

Would you want to know if you had such a gene or not? SW asked five teens this and other questions. Read what they have to say, then decide for yourself.

Anne: I don't think I'd want to know what's in my genes because I might not be able to live my life normally. I'd have trouble concentrating on other things, like school.

Marie: I'd want to know if I had the gene because I wouldn't want to be shocked if I got sick someday.

Peter: Yeah, I'd want to be able to plan my life accordingly.

Kim: Since it's a gene for a disease that may have run in my family, I'd probably know how to deal with it because I'd have seen other people go through it.

Keston: I'd want to know so I could do research and prevent the disease from happening. Maybe I could help cure the disease.

SW: Unfortunately, there are no cures for most of the inherited illnesses doctors can test for today. Does that change your opinion about whether or not you'd want to know?

Keston: Well, maybe. I think knowing I could get an incurable disease would cut short my dreams. I think I might become obsessed.

Anne: I think that knowing would really ruin your life. But then again, you might want to get tested because there's always the chance that you don't have the gene, and then you wouldn't have to worry.

SW: Ultimately, who should decide whether or not you should be tested--you or your parents?

Keston: Me. I reserve the right to say, "No, I don't want to be tested." I don't like to be pushed to do anything, especially if I'm not prepared to handle the news.

Kim: But I think most parents want the best for their kids. If your parents have you tested, they might be able to get you on a waiting list for treatment early on, instead of waiting for the disease to take effect.

SW: Some scientists feel that kids under age 18 shouldn't be allowed to know what's in their genes. Is that fair?

Anne: I think it should be up to your parents, not some scientists, because parents really know their kid. The kid might be someone strong who can handle the news at a young age.

Keston: I think it's unfair for scientists to decide. If you're a teenager, you can handle it.

Peter: I think age 18 is a good idea--or you might want to wait even longer, like closer to the age when you might get the disease.

SW: If you were interested in dating somebody and you found out he or she had a gene for a certain disease, would that make a difference to you?

Kim: It wouldn't make a difference. If you really like a person, you should just enjoy the time you have with them.

Anne: If they just had the gene, not the disease, I don't think people would really care. At our age, the gene probably wouldn't take effect for a while. But I think when you're older it could make a big difference. I'd really like to say it wouldn't be a factor, but it probably would.

SW: How about when you're thinking about getting married and maybe having kids? Both you and your spouse will contribute genes to your children. For some genetic diseases, all it takes is one bad gene to make someone sick. Would you be tested to see if you could pass a defective gene on to your child? Would you ask your future spouse to get tested before you get married?

Keston: I don't think genetic testing should play a role in life decisions. And I'd want to have the kid no matter what.

Anne: For diseases that are really serious, I'd want to get tested. I think I'd feel really guilty if I passed a fatal disease on to my child.

SW: What are some bad things that could come from genetic testing?

Kim: Your parents and teachers might give you so much special treatment that you wouldn't feel like a normal person anymore.

Marie: Other people might act really immature and say, "You're going to be different." Peter: Employers might not want to hire--or pay the medical bills--for someone who had a defect in their genes. There might be discrimination at work.

SW: If you do get tested for a genetic illness, who should have access to the information?

Peter: Only me and my family. I'd worry about discrimination.

Marie: I agree. It's really no one else's business.

Kim: I think your doctor should know too because he or she might be able t do research on that particular disease and help you.

What's in your genes? Would you want to know?
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Article Details
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Title Annotation:is it best to know if you may inherit a serious disease or not
Author:Freiman, Chana
Publication:Science World
Article Type:Panel Discussion
Date:Dec 8, 1995
Words:927
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