Tuesday, February 10, 2009

Home visits and graveyards: Ellen Magenis oral history

We have just received the transcript of the oral history interview with geneticist R. Ellen Magenis, M.D., as conducted by Susan Hayflick, M.D., in December of 2008. Below are just a few of the interesting tidbits; the full document will be available soon. Enjoy!
HAYFLICK: So tell me about some of the particular, either individual patients or families or chromosome cases that you remember. Sort of some of the discovery moments of your early career.

MAGENIS: Well, it was mostly based on something that looked a little different cytogenetically or clinically. It was really nice to be able to compare and have both sides to look at the chromosomes. So I think it was very natural to start trying to do something with that, with that data that we were getting. And some of the early days, one family that I remember very well was because there was a specific chromosome that seemed to break. And little material in between to show that it wasn’t just a clean break. And decided to look at the parents. One of the parents had it. And decided to look at other family members. And ended up with a huge category that was put in kind of a circle that we had—photography and our art department helped get that out.

So, and it took us up to the graveyards to look at names and that kind of thing. Into the houses. Drive up to wherever the family member lived and usually got a sample. I remember one family very well. Actually, two, in which the father did agree to do it. And sat there, and we did it. And then he keeled over in a faint. And his two little boys came out and said, “Dad, we did better than you.” [laughter] It was quite fun.

HAYFLICK: Yeah.

MAGENIS: And then, oftentimes I’d take one of my kids along. There was only one time that I was really worried, because they locked the door and we couldn’t get into the car. Things like that. And one of these mothers didn’t want me to do her baby on the kitchen table, which is what I usually did. And so she held the child. Well I tried probably a third time. And in the wrong position, and it was only about six months old and wiggly. I have to excuse the fact that I didn’t get it. But when I got back to Portland, my daughter went next door, there were twins just her age, and announced to them that babies don’t have blood. [laughter] Mother couldn’t admit. So I had to talk with her a little bit about that. It was difficult.

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HAYFLICK: We were talking a little bit about your being both clinical geneticist, that is, hands-on practicing physician to patients with genetics disorders, and also the head of a very well known clinical cytogenetics laboratory. And I was asking you how you thought your role in both of them either benefited or maybe in some ways perhaps limited, but how that influenced your work.

MAGENIS: Some of this, I’m not quite sure how to say. But I think that it allowed a lot of background, including the emotional parts, and the parts that might be devastating to be dealt with in both respects. You’re not going to take it away, but you can stay involved. And I think that’s one of the reasons why I wanted to stay involved, as did many of the patients. They want to come back, and they want to find out more. Go home and read about it and see what they find, and then come back again.

And that endeavor is not always acceptable to some of your colleagues. And I think that’s the area I’ve had the most trouble with. And particularly recently. And I’m not sure this is the place to say anything further, but I think you know what I’m talking about.

HAYFLICK: So you maybe found yourself being able to follow patients from their first visit through their cytogenetic malaises, back to the discussion of an abnormality to further–

MAGENIS: Exactly.

HAYFLICK: Further studies, or further exams of other family members and maybe even reaching into other generations or extended family members.

MAGENIS: Yes.

HAYFLICK: But that was often, and perhaps now maybe more than ever, with all the limitations on how we practice medicine, that that was not how most people did it and maybe connected you, I think, to families in a way that wasn’t so typical for physicians.

MAGENIS: Certainly male physicians. But other female physicians that I have known, because there are more now, more in pediatrics, more in some of the laboratories. And the attitude is different. And I think they see some of the limitations that I do, as well, when all the talk seems to turn to money rather than what we can do to help the families and the patients.

HAYFLICK: Yeah. So the forces that influence the way we practice, you’ve seen a lot of changes in your years as a professional. You’ve seen changes in the technology, and certainly the ability to diagnose. You’ve seen changes in the economic structure of medicine.

MAGENIS: And the ability to support the families.

HAYFLICK: Yeah. You’ve also been in a–

MAGENIS: And there’s also jealousies, particularly if they think you have a possibility of making more money, and they would want to do that.

HAYFLICK: Jealousies, you mean, among other physicians.

MAGENIS: Yes.

HAYFLICK: Geneticists aren’t known for being particularly highly paid physicians, though, are we?

MAGENIS: Physicians anyway. But there still are some that are entrepreneurs out there.

HAYFLICK: Right.

MAGENIS: And if you believe that males and females, that if you trained them appropriately from birth, you could change their attitudes, it becomes quite clear that males are males and females are females, for the most part.

HAYFLICK: Yeah.

MAGENIS: Some ambiguities, but–

HAYFLICK: That that Y chromosome really actually has some purpose? [laughter]

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MAGENIS: We had a very successful, I would say, Christmas party for the Prader-Willis in spite of the fact that of course the main reason why we felt it was necessary is because they couldn’t be taken to regular functions with food available, because they’d even gobble enough that they would have to eject some of the food.

HAYFLICK: Yeah.

MAGENIS: But parents go along with it. And I think one of the difficulties through those years were do-gooders who believed that everybody, including the mentally retarded or unbalanced, had the right to do their own thing. And not thinking about what it does to the families, et cetera, or to their health. And had some legal run-ins with some of them in trying to teach about appropriate diets for Prader-Willis. Which for a long time, we were able to use some of the dietitians at CDRC, until they started having fewer and fewer actually hands-on kind of people. So they can be difficult in their drive and, what shall I say, enthusiasm for rights. Well, we have rights. But we don’t have unlimited rights, supposedly intelligent people. So we have to be curbed sometimes.

HAYFLICK: So you’re referring to the inclination for most people with Prader-Willi Syndrome to eat incessantly and really in a pathological way–

MAGENIS: Exactly.

HAYFLICK: –that leads to progressive morbid obesity and really very–

MAGENIS: And death.

HAYFLICK: –very serious medical complications.

MAGENIS: Right.

HAYFLICK: And that it’s not within the, within the rights of a person with Prader-Willi Syndrome to drive themselves to death through food, that there’s a need to intervene.

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