Genetic Testing

[MUSIC PLAYING]

REPORTER (VOICEOVER): There are now more than 1,000 genetic tests, for everything from baldness to breast cancer, and the list is growing. Question is, do you really want to know what might eventually kill you?

MAN: If I tell you, particularly incorrectly, that you have an increased risk of getting a terrible disease, that could weigh on your mind. That could make you anxious. That could be the filter through which you see the rest of your life. It could really mess you up.

REPORTER: Every ache and pain, I think is the beginning of the end.

MAN: If you ever worried you were at risk for Alzheimer's Disease, then every time you can't find your car in the parking lot, you think the disease is starting.

REPORTER (VOICEOVER): Doctor Robert Green of Boston's Brigham and Women's Hospital, has been pondering this issue for years. Green led a study of people who wanted to know if they were at a higher genetic risk for Alzheimer's. It was thought that people who got bad news would, for lack of a better medical term, freak out. But Green and his team found that there were no significant differences between how people handled good news and possibly the worst news of their lives.

REPORTER: So you found that people who ask for the information usually can handle the information.

MAN: That is what we found, yes.

REPORTER: Good or bad?

MAN: That's right.

REPORTER (VOICEOVER): In fact, most people think they can handle it. According to a CBS News poll, 58% of Americans say they would want to know if they carried a gene for an incurable disease.

MAN 2: Just no critiquing my surgical technique, OK?

REPORTER (VOICEOVER): Doctor William Harbour, of Miami's Bascom Palmer Eye Institute, is a pioneer in treating ocular melanoma—eye cancer. He has also developed a new genetic test that divides patients into two classes of survivability—class one and class two. Very simply, class one cancer cells, like these, still act like normal cells and can be killed. In class two, the cells have mutated and have begun to spread throughout the body. There is no cure for class two.

REPORTER: As far as accuracy goes, compared to other genetic tests out there, where does this stand?

MAN 2: I'm told by my colleagues in other fields of oncology, that this is perhaps the most accurate prognostic test of any cancer.

So you've been doing well since you went home?

WOMAN: Yes, no problem.

MAN 2: All right, let's take a look here.

REPORTER (VOICEOVER): Now, when his patients inevitably ask if the disease will kill them, Harbour has a more precise answer. Sunni Ziroff already knew she had ocular cancer when she first saw doctor Harbour. Like all of his patients, he gave her the option of peering into her future.

REPORTER: What did that mean to you, class one versus class two?

WOMAN: Whether you live or die, quite honestly. You just—you don't know. It scares you and sits you straight up and you want to know.

REPORTER: But if there's no proven treatment, why would you want to know?

WOMAN: Because I have a bucket list.

REPORTER (VOICEOVER): As a veteran ER doctor, Scott Gaines is used to patients asking him what their chances are. But two and 1/2 years ago, he was diagnosed with eye cancer as well, and found himself in doctor Harbour's clinic.

MAN 3: I had to ask him. I said, well, can you tell by looking? Come on, give me some odds. What do you think? You've seen enough of these. And he didn't answer it the way I wanted. It was 50/50.

REPORTER: 50/50?

MAN 3: He gave me 50/50, class one, class two, and did I want to have the test? And of course I want to know.

MAN 2: Even if we can't cure every patient, most people want as much information as they can get, to know how to modify the way they're living their life.

REPORTER (VOICEOVER): Doctor Harbour learned that personally, when his own father was diagnosed with melanoma.

MAN 2: I knew that the doctors couldn't cure him, but I knew that he only had a certain amount of time to live, and it dramatically altered how I interacted with my father and how our family interacted with each other. And by the time he died, we all felt that we had come to a good place.

REPORTER: These are precious moments.

MAN 2: Correct.

REPORTER (VOICEOVER): But Doctor Evangelos Gragoudas of the Massachusetts Eye and Ear Infirmary says knowing your fate does no good if there's no cure.

REPORTER: Would you want to know?

MAN 4: Personally, I don't. But I completely understand if somebody wants to know that.

REPORTER (VOICEOVER): He tells his patients about the ocular melanoma test, but he doesn't recommend it.

REPORTER: If they ask your opinion, what do you tell them?

MAN 4: I would say that I wouldn't do it for myself or for any member of my family, because if I found that the tumor is highly malignant, the so-called class two category, I have nothing to offer to the patient.

REPORTER (VOICEOVER): And what you know, can hurt you in other ways. People who are at higher risk for disease, and know it, may have problems with insurance, though genetic discrimination is illegal. Still, for many, there is no such thing as ignorant bliss.

MAN 5: OK, can you tell me what it says? Angel princess, right.

REPORTER (VOICEOVER): Nicola Powers died at age 45 from Huntington's, a rare degenerative neurological disease for which there is no cure. Her daughter, Kristen, grew up knowing there was a 50/50 chance she'd die the same way.

WOMAN 2: One of the big questions you have to ask yourself is, is the burden of not knowing greater than the burden of knowing?

REPORTER (VOICEOVER): For 18-year-old Kristen, the burden of not knowing was too much. She got tested last May.

MAN: It is a very hard to face a moment where you're going to learn for sure that you are going to get this terrible disease, often the same disease you've watched your parent decline with. People make their own personal decision. I think either decision is fine. But they're faced with this very, very dramatic moment.

REPORTER (VOICEOVER): Those moments could soon be happening more often for more people. Americans spent five billion on genetic testing in 2010, and that number is expected to quintuple in the next decade.

MAN: Maybe even 10 years from now, certainly 20 years from now, it would be unthinkable not to have your genome as a resource for your own health.

REPORTER: And you think most people will take advantage of that?

MAN: Absolutely. It will be as common as getting your blood pressure taken.

REPORTER: Clearly, the people we talked to for this story decided genetic testing was worth a try. They wanted to know, and they gave us permission to share their results.

REPORTER (VOICEOVER): Kristen Powers, now a freshman at Stanford, tested negative for Huntington's. Neither she nor her children will get the disease. She's making a documentary about her experience.

Sunni Ziroff's cancer is class one, so there's a good chance she's cancer-free. Her bucket list will have to wait.

Doctor Scott Gaines is class two. His cancer is spreading.

MAN 3: I like to savor moments, savor things, smell, teach my boys to smell, remember this, get all your senses into it. Would I have done that if I was a class one? I don't know.

REPORTER (VOICEOVER): At this point, he's already outlived his prognosis.

MAN 3: I feel fine. I shouldn't feel fine, Tracy. I do. Why is that? I think most people would tell you I've got a good attitude. Is it prayer? Is it what? I don't know. Am I still getting scans frequently? Oh, you bet I am.

REPORTER (VOICEOVER): And no genetic test can replace another powerful force in medicine—hope.

REPORTER: How about five, 10 years from now, where do you think you'll be?

MAN 3: Well, I hope I'll be a granddad then.