Human Genetic Variation
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Activity 5 - Making Decisions in the Face of Uncertainty - return to student activities home high school student taking notes
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Transcripts for Activity 5 Videos

Video 1 - Considering the Test
Video 2 - A Family Question
Video 3 - The Test Results
Video 4 - A Diagnosis of Breast Cancer
Video 5 - Jennifer's Decision

Video 1 - Considering the Test

Charlie: Something is bothering you, Beth. What is it?

Beth: I just read a newspaper article about a test for a breast cancer gene. I guess with mom’s diagnosis, I’m worrying about it.

Charlie: But she’s a lot older than you.

Beth: When mom was first diagnosed with cancer, she was my age. I remember it, I was 13 years old. It wasn’t easy. And I never told you my grandmother died from ovarian cancer.

Charlie: So what did the article say?

Beth: Apparently there is a special kind of cancer that runs in families. If you have a certain form of this gene, you’re at a high risk of getting breast cancer. Now they have a test for it.

Charlie: What do they mean, high risk?

Beth: I don’t know. At least you know that you’re more susceptible. Or you find out that you’re safe.

Charlie (Kindly): So go get the test if it’ll put your mind at ease.

Beth: But that’s just it. I don’t know if it would make me feel safer. What if I find out that I do have it? I’ll feel doomed.

Charlie: I think we should find out as soon as possible. You’ve got a cloud hanging over you as it is.

Beth: A cloud! Do you know how worried I’ve been all these years? That’s why I was so confused about taking birth control pills. At first, they thought it would increase the risk of getting breast cancer, so I didn’t take them. Now, I read that it can actually lower the risk of ovarian cancer.

Charlie: Wouldn’t you feel better if you knew for sure about that gene?

Beth: I just don’t know.

Video 2 - A Family Question

GC: I’d like to make sure we all understand what we are here to discuss.

Mother: It’s because of me, isn’t it?

GC: Beth is interested in having the BRCA1 and 2 genetic tests. These tests help us identify women who have a genetic predisposition toward breast cancer and we find that we can get more information to help us understand Beth’s situation if we first test family members who already have cancer.

Mother: I’ve already been through the ringer with this disease. What possible good is this test going to do for me?

Beth: This test is for me, Mother. I have a right to know. And for the sake of my family.

Mother: I’m already the family outcast, the one with this condition, who has passed it on to all of you.

Beth: No one is blaming you, Mother. This is just something our family has to deal with.

GC: Let’s not get ahead of ourselves. The first step is to understand what such a test can tell you and then decide if this is information that you want to know.

Mother: What if the family doesn’t want to deal with it? Your sisters, aunts, and cousins might not want to know all this stuff. It’ll be one more thing to have a big family ruckus over.

GC: You will decide who you want to tell. Now, we will encourage you to tell your relatives because the information can be useful to them regardless of the result. I can help you think about how to tell them if you decide you want to.

Mother: And if I take the test and it turns out that my cancer was related to one of these mutations, what will you do?

Beth: Well, I’d continue to watch carefully for any signs of cancer, and I’d get Jennifer tested. She’s my teenage daughter.

GC: I can understand your concern about your daughter. But there are several reasons why we do not offer testing to children under 18 years of age—the foremost being that the test results won’t change the care we give Jennifer.

Mother: The world has gotten so complicated. I don’t know that more information is better. But you are right, I should get tested so that you can have a better idea of what to do. My sister has been wondering if she’s at risk, as well. After everything I’ve been through, I’ll be able to handle this information.

Beth: I really appreciate this, Mom. I want to know. I’ll either be relieved, or I’ll have something real to worry about.

Video 3 - The Test Results

GC: Beth, the results show that you and your mother have the BRCA1 mutation.

Beth: Hmm. I had a feeling about this after my mother’s test was positive. So what does this mean for my family and me?

GC: Two things. For your family, it means that you could have passed this mutation to your children. For your own health, it means you have an increased risk of developing breast and ovarian cancer and possibly at a younger age.

Beth: Is there anything I can do? I mean, to improve the odds?

GC: You can continue to watch yourself closely and get regular checkups. We might want you to start having mammograms earlier than you normally would. If you do develop cancer, early detection greatly improves your chances that the treatment will be effective. In addition, some people consider preventive surgery, but that is a tougher decision to make.

Beth: I see. I know my sister is going to want to get tested. If her results are negative, does that mean she is safe?

GC: If she doesn’t have the mutation, then her chances of developing breast cancer are the same as other women without the mutation.

Beth: What about my children? I am wondering how much I should share with them.

GC: Your son and daughter each have a 50 percent chance of having the mutation we see in your family. You may want to think about whether you want to share this information with them. Children vary in how interested they are. Remember, they're not candidates for testing because nothing at this time indicates that we would change their medical care in any way.

Beth: You’re right. I need to think about all of this for a while. Jennifer would probably want to know. But my son is only 12. I'm not sure if he would see how this affects him.

GC: Beth, please just take your time with this news. We can meet again to discuss how you’re doing and what you want to tell your children, okay? Do you have any concerns?

Beth: It’s just that now I feel so different from other people.

GC: Everyone is different. Just as people vary in their physical appearance, they also vary in their susceptibility to disease. What you are feeling is perfectly normal. It may take a while for you to accept it. Give yourself some time. Talking with some of your family members, even your mother, may help.

Beth: At least now I know some of the cards I’ve been dealt.

Video 4 - A Diagnosis of Breast Cancer

Charlie: I felt the oncologist was encouraging. It’s really good that we caught it early.

Beth: Ever since Mom got her results, I knew I was going to have the mutation, too. I knew this was going to happen.

Charlie: Well, it’s just the roll of the dice.

Beth: Yeah, just chance. . . . It was a relief that Aunt Susan tested negative for both genes. At least my cousins don’t have to worry. And now that I know that I have cancer, I’m actually a little relieved.

Charlie: Relieved?

Beth: Now I can focus on something specific. You know, I’d been thinking about having both my breasts removed, even before the cancer. Now I have a real reason to do it.

Charlie: Beth, you’ve got to stay positive. Medicine is getting better. They have a whole treatment plan worked out for you. They said there wasn’t any trace of cancer in your other breast.

Beth: But the risk is high.

Charlie: Well, we have time to decide about that.

Beth: I know Jennifer is going to take this hard.

Charlie: She’s a strong girl.

Beth: You know, we probably should tell her about my positive gene test, too. I know we felt that she was too young when I got tested, but now maybe she really should get the test.

Charlie: She’s barely 19, she’s doing so well in college. This is going to be a lot for her to handle all at once.

Beth: But I wanted to know everything I could.

Charlie: She’s still young. We’ve got some breathing room. Let’s just take things one step at a time.

Video 5 - Jennifer's Decision

Jennifer: You seem to be back to your old self.

Beth: Yeah, I feel good. I didn’t know it would take so long for my energy to come back.

Jennifer: You look great, too.

Beth: Thanks. It’s been a year since the lumpectomy, and so far, it looks like I’ve been cured. How about you? Have you given any more thought to the test?

Jennifer: Sure, I think about it. I’m young and I live my life like I’m at a high risk anyway.

Beth: You’ve been doing the self-checks?

Jennifer: Of course, once a month. And I go to the doctor twice a year. The nurses even know the name of my cat.

Beth: We were so worried about how you’d handle all this information.

Jennifer: Well, now I’m more worried about what other people know about me.

Beth: Other people like whom?

Jennifer: You know I’ve started interviewing for jobs.

Beth: They can’t ask you about personal stuff, can they?

Jennifer: Maybe not, but after I’m hired, I want to make sure that I get my health insurance. I don’t want to go in with this test on my record.

Beth: That sounds like discrimination.

Jennifer: For the insurance companies it’s just business. Anyway, I just don’t need to know about this gene, at least not now.

Beth: It’s up to you, but I can’t help still being your mother.

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