Dicussion Responses

Group 1: We talked mostly just about Case #2, about the APOE testing. This is what we came up with. Basically, what we felt was, depending on whether we ourselves would want to know whether we were carrying this susceptibility to Alzheimer's, if we wanted to know and we were the doctor, then we wouldn't tell this patient. If we didn't want to know and we were the doctors, we wouldn't tell the patient. So that really, the judgment, you're making the judgment decision yourself for your patient. We talked about maybe trying to see whether our patient would want to know or not but you can't really find that out without telling them, so they would know something was up. So, we don't know.

We briefly talked about the Question #1 about whether there's a difference between genetic information and other medical information. Most of us were leaning towards yes, there is a categorical difference but we didn't finish that one, so that's where we left it. And we didn't talk about anything else.

Dr. YOUNG: Why do you think there's a difference, by the way, the first question?

A: It's like your generation and future generations and is non-definitive, indefinite. You don't know whether it's going to happen or when it's going to happen, or to what degree it's going to happen.

Dr. YOUNG: Next Group 2, 3.

Group 2: Nobody in our group wanted to speak. When we looked--I mean, we had a good discussion. I mean, no one wanted to stand up here in front of you. For #1, we were all over the place. We felt at times that the genetic information was more predictive and more invasive and then at times we felt that regular medical information could be predictive and invasive. And then we felt that genetic information could be non-predictive, as could regular medical information. So, we were left with the same question mark. We were kind of on all sides of the issue.

The APOE gene, we decided that the doctor had missed her opportunity to have some sort of disclosure before the test was administered, that the patient should somehow be told that this may lead to other information beforehand. And failing that, afterwards, she had an obligation to let the patient know what she knew, that the patient has certain autonomy that has to be respected. The question was how to do it. We thought that perhaps the patient should be asked that if there was any other information that these tests might tell now or in the future, if the patient wanted to know, and let the patient make the choice. Sort of like, do you want to know the sex of your child at the amniocentesis. There are some patients who would prefer not to know and some who would want to know.

On the Case for tests, on the Dor Yorshium, we felt they probably were practicing a form of voluntary eugenics, voluntary being the key word, and that should it be a model--we got bogged down here a lot with cost versus benefit and how you do counseling when you do mass screening tests. We felt it would be a better solution perhaps to give each person tested the information individually and then let them make their choices and love life as it happens and decide for themselves whether they want to take risks, each knowing their own information.

Dr. YOUNG: I've got a third group coming up.

Group 3: We found, in our group, the difference between genetic information and other types of medical invasion. We weren't exactly sure if genetic information was in fact different than medical information. But we were discussing the issue of dependent on the situation and the condition being tested, whether or not there would be a treatment available or not might be a factor.

As far as the APOE gene, we also agreed that the doctor missed her opportunity to tell the patient that screening for this DNA in fact leads to other information and maybe a questionnaire would be an inexpensive way to cover a lot of issues. As far as the last case, we were sort of divided in our group. Some thought that definitely it should be done to prevent birth defects. Others thought that it should just sort of let nature take its course. Whether it would be a model for a national consent sort of worried us as far as privacy issues.

Dr. YOUNG: You're fourth.

Group 4: The first issue we felt was perhaps the genetic testing is a little more quantitative, only in that you can actually predict some numbers for things. But most importantly, the fact that it effects your family or extended population has a larger difference. Not that that not might be true with non-genetic cases, as well. So, there were definitely differences there. In the second one, we agreed with the idea that the physician really should have been informed before the fact, given that they didn't, it occurred to me, sitting here after the break that what might be a possible avenue is to refer the patient to somebody that would be more appropriate to deal with their memory loss and give that test information to, perhaps, and deal with it that way. Simply a cardiologist might not be the best person to give that information to. But I think the onus was on the cardiologist, really to try and find out. We didn't get to three so I can't really address that.

Dr. YOUNG: Five.

Group 5: On the first one we believed that there was a qualitative difference in genetic information. Part of it is predictability. My concern is what you do with the information. You're dealing with something that's significantly different with the genetic code, something that ties all light together. When you start doing things to it and doing things to the whole scene with living matter, so it's clearly different than dealing with an individual's physiology or blood count.

Number 2, we came up with a solution that the cardiologist probably isn't the right person to tell them about anything but the increased risk of heart disease and that she may indicate that there's more information to be gotten from this test and that she probably ought to go back to her GP. And of course, the cardiologist then calls up and says, "Hey, you better alert her to these results." Because there's a trust factor in here. If you hear it from a cardiologist, you're going to believe that they know what they're talking about with Alzheimer's.

Number 3, we merely see this as a eugenic program, negative eugenics. Don't think it would be a good model because of the clumping. Clumped, the lethal, it's not a lethal concern. You report back to them that they have a recessive gene and one of two or one of three diseases, they don't know which one. It's not really good to give them that much information. Consequently, I think it's less reasonable to feed and screen for non-lethal. There's an argument for lethal, perhaps, but not for non-lethal. Did I do OK, people?

Group 6: For our group, for Question 1 on genetic versus general medical information, we kind of split it up, saying that for general information, yes. For general information like high blood pressure, cholesterol, what are your current status, that's OK. Again, the genetic information, looking at what information are you going to be passing onto your children, and your children could pass it on, so you're looking at second and third generation, so qualitative is a big difference. Quantitative, we didn't get into too much detail about--I mean, Tom mentioned, yes, you start talking genes, you're talking a wide spectrum of other diseases that could or could not show symptoms, syndromes, and symptoms, only we didn't get that far.

Number two, blood tests. I didn't go your direction. Our group went, what are the legal obligations of the doctor to inform the patient? And if the doctor doesn't inform the patient, does the doctor write the notes on the side of the patient's listing. And since patient can get a copy of the doctor's report and she finds out about it indirectly, what is she going to think? Secondly, cardiologists should or should not be the person to tell you that you have a great chance of becoming lost in St. Louis or someplace. So, they turn around. Fine, let's pass it on to a genetic counselor. Then we have a person say, if I'm going to a cardiologist, the cardiologists says "Oh, we're going to send you to a genetic counselor, hang around," she's going to flip out. So, hand the buck down to a neurologist because it's going along saying, "Well, I've got something here. We'll pass you to a neurologists, why don't you come and see a neurologist." The neurologists says, "This looks interesting, perhaps we should sit down and talk about this," because then you can track her a little better than just walking in and saying "Oh, this is great. Looks good. APO-3, this is your specialty and we want you to go see a genetic counselor right now."

So, we decided let's weigh it down, don't tell her but pass it on to someone who would in turn tell her, so at least she has the right to know what her tests have shown. Because otherwise, where does confidentiality between a doctor and a patient, was the patient allowed to keep it to themselves or was the doctor allowed to keep it to herself and not pass on?

Group 7: For Group 3, we had the luxury of having a person of the Jewish belief and they talked about this group and she was very informative and very knowledgeable. And because it is a small group and it's not truly an arranged marriage but it's very limited on people you can date and they can date first cousins, the chance for a homozygous recessive is really high. She did a very good job of persuading me that it's a very good idea and it is a limited, small group.

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