My Father, My Brother, and Me

Michael Kinsley

Michael Kinsley

Currently a columnist for Time, Kinsley is a political commentator and former editor of The New Republic, Harper's and Slate. He also co-hosted CNN's Crossfire for six years. In 2001 he disclosed that he had been diagnosed with Parkinson's disease eight years earlier. Since then he's written frequently about living with Parkinson's and the political and ethical controversies surrounding stem cell research.

“I kept it private about as long as I could without it becoming ridiculous, and I think that was a right decision. Yes. I'm glad I went public, but I'm also glad I didn't go public earlier.”

Back in August of 2001, President Bush made his initial decision that stem cell lines were OK [if they were created before Aug. 9, but not OK if they were created after Aug. 9]. What do you recall about your reaction to that decision? ...

Well, I was very upset obviously, and I didn't agree with it obviously. And one of the things we knew in retrospect that we didn't know at that time is that there are far fewer lines that meet his standard that are of any use whatsoever in stem cell research than he -- let's give him some credit -- than he believed at that time.

What did you feel about the logic of the decision itself, the idea of creating this demarcation of August the 9th?

Well, the demarcation, you can see, makes a certain amount of sense in that these lines [of stem cells] already existed. [They] couldn't be undone, and there's no point in their going to waste. But then the question arises, what about all the embryos that are going to waste in fertilization clinics? And in his original speech in 2001, Bush actually praised fertility clinics, quite correctly, as having brought happiness to lots of couples who otherwise couldn't have children. But you've got to understand how that works. That works by creating in a petri dish, in a laboratory, many embryos and implanting them in the womb. And when you start that process, in fact it is the purpose of the process to create more embryos than will ever become full-fledged human beings. Some are put in the womb and then don't survive, and then others are never even used [after being created].

So my big problem with the Bush policy has been, basically, the hypocrisy of it. Why hasn't he or any of these other politicians who are against stem cell research come out against fertility clinics? Basically they can't, because fertility clinics are too ingrained in our culture.

... The argument you're making is that, logically, if you believe embryos are human beings, then fertility clinics are at least as faulty in their moral sins [as] stem cell research.

Oh, yes. ... There used to be a thing called fetal tissue research, and I think a lot of people get stem cells and fetal tissue confused. Fetal tissue research involved advanced fetuses. Embryonic stem cell research uses embryos that are fewer than 200 cells. You can't even barely see them without a microscope. Now, some people feel that that doesn't matter, that once conception has taken place, those are human beings, and they have the same rights as you have and I have. And I would say that even though that seems very implausible to me, if someone believes that, I respect them for it. But the test is, do they then oppose fertility clinics? And I don't just mean say they're against it. The victory over stem cell research, well, it didn't actually save a single embryo, because they all get thrown away or frozen after their use in fertility clinics.

But even if every single one of those embryos that otherwise might have been used in stem cell research to save lives and improve lives, even if every one of those was actually murdered, if you want to say that, it's a tiny fraction of the number who get murdered -- if you want to think about it that way -- in fertility clinics every day.

I don't know if you recall the image, but when President Bush vetoed one of the stem cell bills a couple of years ago, he was surrounded in part by people who [had] children from in vitro processes. Does that strike you as a real hypocrisy?

Well, it's almost too comic to be considered seriously hypocritical. I don't even know how many people have been born as a result of in vitro fertilization since Baby Louise. She was the first, I believe, when, 20 years ago or something? Well, for each one of those, there are multiple embryos that weren't saved. And there are many, many people who have gone through this process, and unfortunately it has not been a success. And that has involved multiple embryos. So I don't have the total numbers, but the idea that you could bring all of these embryos to term and then put them up for adoption is a joke. ...

How do you respond to the basic slippery-slope argument, that you need to draw lines, because if you don't, this will lead us to cloning; this will lead us to creating organisms that will then be used for organ farms? ...

Well, to me, the slippery-slope argument is the classic Luddite argument, and it's been made against virtually every bit of technology that has gotten the human race to where it is today, which I think is a pretty good place, with some exceptions, obviously. ... People made the slippery-slope argument about in vitro, for example, when it started. And now, as I say, even in the process of coming out against stem cell research, George Bush felt obliged to say in vitro has turned out great. I'm a believer in progress, and I can't think of an example of a technology that has harmed us.

Is there anything, though, that gives you qualms about it? Do you view an embryo, then, as no different than any other tissue -- a hangnail or whatever? Is there anything which --

Well, let's not talk about hangnails. Let's talk about insects; let's talk about rodents. ... Any living being is more complex, is closer to a human being in every way except potential, than an embryo. So yes, I have no sentiment about embryos at all.

How do you view the ... big breakthrough that's happened, ... where they've been able to reprogram adult cells, other sorts of tissue, and turn them back into what they hope will function like stem cells? Do you think that that takes the political argument off the table?

No, in a word. It's a great development, and I'm thrilled to see it, and I hope a lot comes from it. But number one, any scientist, including the scientists who were responsible for this development, would say, for heaven's sake, you don't drop all the other possibilities because this one has turned out to be very promising. We should be pursuing all of this.

Number two, six years have gone by [since Bush's decision to limit stem cell research]. And, you know, those are six important years to people like me, for example. There are many therapies very common in chronic diseases of all sorts where there's an age cutoff, and if you're over a certain age, you can't get it. Well, besides the six years of delay, you know, it could well be that when the big breakthrough comes, I will be four or five years past that age. And if that happens, I'm going to be really annoyed, at George W. Bush in particular. ... So even if the issue of stem cells disappears tomorrow, I would judge George W. Bush quite harshly based on what he did during his administration.

Because of ... the delay and the price that that cost?

Yes. ... If I believed that he really thought that an embryo was a human being with full rights, I wouldn't be happy with that, and I'd still try to change the political outcome, but I would respect him for it. But because of this business about fertility clinics, I just don't believe he really means it.

What's your level of frustration with how American politics have interfered with -- if you want to use that word -- or have impacted scientific progress? ...

Well, I think anything should be subject to politics if it has political implications. So I can understand, once again, if I thought that stem cell research and fertility clinics were essentially a holocaust for real human beings, I would not be concerned under the label of the politicization of science. It's that I don't believe that that bothers me. ... I don't regard the politicization of science as a slogan that speaks to me especially. I mean, there may come some science that I want to politicize in the future, so I wanted to be a little careful.

[Some make] the argument that George Bush deserved some credit for the more recent breakthroughs in taking an adult cell and reprogramming it to become a stem cell because he drew that line. ... The argument is essentially that he forced people to come up with an alternative.

Well, I don't think that's a very impressive argument. It's not as if he did anything to promote the actual breakthroughs that happened. It's like saying if he had blocked off Interstate 280 here, we should give him some credit because people found a detour around it. That doesn't make any sense.

When you first wrote about your own involvement with this because of your own Parkinson's diagnosis, how difficult was it for you to sort of set aside your own privacy and say, "I care about this issue enough that I'm going to write about it, and I'm going to write about it in the first person"?

Well, it was difficult, because I don't really like doing that. ... I also had to ask myself whether it was a conflict of interest to be writing about something that affected me so directly. But then I thought, well, that's sort of silly, because politics is about things that affect people. If they didn't affect you, we wouldn't need to bother with it.

So in the end, was there a sense of feeling, as a journalist, disclosure is what one ought to do? And so you can write about the things you care about, but you also have to tell people why you care?

Well, actually, if you went back, you would find I wrote a couple of things before I had disclosed that I had Parkinson's, and maybe I shouldn't have done it. At any rate, that made me feel a bit queasy, and that was one of the things that made me feel I ought to just go public.

Are you glad you made that choice?

Well, I mean, it's been seven or eight years. At this point I don't think I could fool anybody. But back then I could. I think I kept it private about as long as I could without it becoming ridiculous, and I think that was a right decision. Yes. I'm glad I went public, but I'm also glad I didn't go public earlier.

Mike, in [a] piece you wrote for Time six years ago, you talked about the value of denial, and that was a really useful strategy. ... I wonder if you'd sort of comment on what your feelings were about that.

Well, there's two ways you can deal with something like this, or at least that's what I concluded: denial and confrontation. And confrontation is far and away the more socially approved. You know, you get involved in raising money, and you check out every new therapy that comes along, and ideally you find someone to sue and have a class action. This is how people respond in our society. And, you know, there's no right and wrong; it's a question of personal taste. My personal taste was to just try and put it out of my mind. And that wasn't terribly courageous, but it did get me practically a decade where it was virtually not an issue in my life.

You began that article, as I recall, by saying something like, "If you're going to have a serious disease, Parkinson's isn't the worst one to have." Is that still how you feel?

Oh, sure, if you look around. The trouble is there's no rule that says you only get one. So it's not as if, well, you've been diagnosed with Parkinson's; at least you won't get cancer. Basically you're back to square one. But yes, it's much better than almost any serious disease that people get, and especially because there is hope, you know, real hope. And much of it comes from stem cells, but there is other hope, too.

Just since I was diagnosed, there have been new therapies coming on the market. And so, on balance, I'd rather not have bothered, but it's not the worst thing in the world by any means.

When you say there's hope, is that in the end also what is the most infuriating to you about how the last half a dozen years or more have gone, because it's had the impact of delaying hope?

Well, yes. I mean, when you've got hope for something in particular and ... the research clock has stopped, your clock hasn't stopped. Yes, that's infuriating.

Do you mind telling The New Yorker story?

... Tina Brown was editor of The New Yorker, and she quit to go off and start another magazine. ... And S.I. Newhouse, who was the owner of The New Yorker, called me up. And I flew to New York, saw him, and he offered me the job. I did not tell him that I had Parkinson's before he offered it to me. Maybe that was wrong of me. At any rate, I did tell him in the course of the negotiations, after he offered me the job. And he said he understood and that was fine. Then less than a day later, he withdrew the offer.

And, I mean, who knows what goes on in the head of a billionaire? But I suspect that the Parkinson's at least played a role in his changing his mind. And I certainly think that if he'd known all along, I wouldn't even have gotten that initial phone call.

And is that part of why, to you, denial is a perfectly reasonable and perhaps logical strategy, ... because it prevents you from being written off before --

Well, yes. It's certainly an advantage of denial that you can go about your life. The disadvantage and the troublesome part is it involves deception, inevitably. I didn't lie to anyone during those years, but I certainly tried to create a false impression, and that isn't good either. ...

... I'm just curious about how you look toward the future, what your hopes are for Parkinson's research.

Well, I don't follow it that closely. I mean, that's part of the denial thing, I suppose. I'm really scandalously ignorant, but that allows me to remain vaguely hopeful. And, you know, at the moment, it still doesn't affect my life superdramatically. And since I was diagnosed, I've had a great life. I founded Slate, and I got married, and life has been really good. In some ways, Parkinson's is responsible for that. So I'm about to say I can't complain, but of course I can, and I do. But I shouldn't.

[There's been news of] what seemed to be great breakthroughs at the time, but invariably they seemed not to pan out, and they turned into future problems rather than immediate prospects for therapy. Do you follow those headlines? Does that have an impact on you? ...

Well, first let me say, false hopes are better than no hope, you know? The media, yes, will always overhype things, not only in the medical area. And if you followed it very closely -- which I don't, and this might be a good reason not to -- you're going to be on a roller coaster: terribly excited about something, then it will come crashing down. I think that's part of having a chronic disease. But as I say, I have probably gone too far in the other direction. So I miss the peaks, but then I miss the valleys.

I was struck in one of your pieces by the line where you wrote, "Tempus fugit, assholes."

Well, there were several amazing things about that. One was getting the word "assholes" into Time magazine, and, for that matter, getting "tempus fugit" and not having some copy editor say, "You have to translate it." Of course, the translation would have been "time flies," which might have caused Time magazine problems. But yeah, my point was that delay is not cost-free.

You know, politicians very often think the best way to deal with some impossible issue is to study it, have a commission, make a report, hold hearings. And you know, if the question is Social Security reform, maybe that's OK. It just means that we'll go bankrupt a little sooner. But when it's me, I feel more strongly that delay is not the best approach.

... Religion and politics seem to be intertwined tightly; then they have an influence on science. How do you create a system in which science can proceed without being delayed by political and religious considerations?

Well, I think you have to fight each issue on its merits. I don't think that it's a valid argument to say, "This is politicization of science; therefore it's bad, end of argument." In my view, people are always looking for reasons they can say that, that something should happen or should not happen and this is an issue that is beyond politics. It's one of the favorite things that politicians say.

And I don't think that any issue is legitimately beyond politics, you know? ... If I think that stem cell research should be funded by the federal government, which I do, I should have to make that argument, which I have, and I should have to rebut the arguments on the other side, which I feel I've done. I feel the other side has not done that, but I don't think that I can sort of skip all that by saying, "You're politicizing science."

I was speaking to a prominent Parkinson's researcher the other day who was expressing both amazement and consternation at the amount of funding and attention being paid to stem cells because, although he feels they may be useful to help us understand the disease, [he thinks] that any therapeutic uses are decades away. ... So his view was that -- and he's not alone in this -- that stem cells may be one of the best examples we have of false hope. ... Because they offer so much promise in so many areas, many different people can embrace them as a solution, when in fact, if you're really interested in Parkinson's, the solutions may well lie elsewhere.

Well, it is true that stem cells have become sort of the flavor of the month, and you have all these state governments funding research, which is a very peculiar development that is the result of the peculiar politics of this all along. But it's also true that developments have come much quicker, again and again, than anyone has expected in the field of stem cells. And finally, I would say, if it takes decades, so what? I mean, it may be coming too slowly to help me, but it will still be a great thing when it happens.

... How do you feel, more on the sort of social and political level, about the tendency with any disease for people who have it to think in terms of it being a battle that they can or can't win?

Well, this is one of the differences between confrontation and denial. The politics of diseases and the politics of research funding of diseases is really interesting and a little bit depressing. A woman said to me once -- I was speaking to a neurologists' convention totally by coincidence; this was before anyone knew I had Parkinson's -- and this woman had MS [multiple sclerosis], and she said to me, "We just love it when someone famous gets our disease."

And, you know, you can't blame her for that. If you look at research funding per patient for different diseases, it's startling, the differences. You know, AIDS is way up there, and Parkinson's used to be way down. [Actor] Michael J. Fox has turned that around in part. I don't know where Parkinson's stands in the ratings now. And there was a whole slew of famous people who [had Parkinson's], like Pope John Paul [II], Muhammad Ali, Yasser Arafat -- I don't know if he did the cause any good. ... And unfortunately that helped. And it would be nice if our political system were a bit more sophisticated and wasn't so affected by this stuff, but it is.

[Do] you think there's any utility in thinking about it in terms of a battle that one can win or lose, or is that --

Well, yes. Should there be any utility in it? No. Is there some utility in it? Unfortunately, yes.

And the utility is what? ...

Well, the utility is that some of these diseases get earmarked. That's become a very notorious term in the past year, meaning that some politician will say that X number of dollars have to go to this disease as opposed to others. And this is what your scientist friend, I'm sure, is complaining about, because they think that science alone should decide on the merits -- where progress can be made quickest. And of course, he or she is right. But on the other hand, in a democracy, everybody has the right to push their own thing.

One of the things that you wrote in that denial article was that one of the reasons that you had hesitated to disclose your own diagnosis was the fear of being written off in midcareer because you were labeled with this diagnosis. And I wonder -- that was six or seven years ago now -- do you think that's changing at all? I mean, you see examples of highly functioning people like yourself, like Michael Fox, who's having a huge impact. Do you still feel the same way about that?

I think that is still a reality even for me and even for Michael J. Fox. You know, no one has given him a new series. ...

When you have a chronic disease, there are sort of two categories of effects it has on you. There are the effects of having the disease, and then there are the effects of being known to have the disease. And the second category ... in some ways affects you more than the first. And I don't think people who get diagnosed with Parkinson's get fired from jobs very often, I mean, unless they're a surgeon or something. But I do think that they don't find themselves on the short list for the next job, as my adventures with The New Yorker might suggest.

We've tried to legislate against things like this. It may violate the Americans with Disabilities Act to discriminate against someone because they have Parkinson's. I'm not an expert on that field at all. But you can't prove it, and it's not the kind of thing that you really want a lot of litigation over in society. And we're all getting older, and we're all going to have diseases like this.

If they cure Parkinson's tomorrow, as I said, it doesn't mean I'm not going to get something else. So to some extent, you have to say I've been very lucky in most ways, and I'm unlucky in this way, and it balances out.

posted january 29, 2009

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