Robert Klitzman Am I My Genes?

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9/18/2012:

Robert L. Klitzman, MD
Am I My Genes?

Robert L. Klitzman is Professor of Clinical Psychiatry and the Director of the Masters of Bioethics Program at Columbia University. He co-founded and for five years co-directed the Columbia University Center for Bioethics, and is the Director of the Ethics and Policy Core of the HIV Center. He is the author of When Doctors Become Patients, A Year-long Night: Tales of a Medical Internship, In a House of Dreams and Glass: Becoming a Psychiatrist, and other works.

 

TRANSCRIPTION:

Caryn Hartglass: Hello, I’m Caryn Hartglass, and you’re listening to It’s All About Food. Hello! Let’s see, what day is it today? It’s September… gosh, 18th. September 18th! Anyway, I always like to say what day it is because I like to say what day it is. September 18th, 2012 and here we are in Manhattan, and another hour to talk about my favorite subject: food, and some things that I think may be related to it. And today we’re going to have a lot of fun, maybe, but it’s a very interesting subject we’re going to be talking about. And it’s about genes, and I’m not talking about Levi jeans, those things that were so American and now we have outsourced and they’re now all being made so cheaply overseas and if you want to get a pair of real jeans, you’ve got to pay hundreds of dollars for them here in America, but we’re going to be talking about the other genes. We’re going to be talking about the genes, the ones we find on our chromosomes. And I have here with me in the studio, Dr. Robert Klitzman. He’s Professor of Clinical Psychiatry and the Director of the Masters of Bioethics Program at Columbia University. He co-founded and for five years co-directed the Columbia University Center for Bioethics, and is the Director of the Ethics and Policy Core of the HIV Center. He is the author of When Doctors Become Patients, A Yearlong Night: Tales of a Medical Internship, In a House of Dreams and Glass: Becoming a Psychiatrist and other works. And we are here today to talk about his latest book, Am I My Genes? Welcome to It’s All About Food!

Dr. Robert Klitzman: Thank you very much. I’m delighted to be here.

Caryn Hartglass: Now I just have to add that there are some things missing in your bio, okay? It doesn’t say that you starred in Our Town in 6th grade…

Dr. Robert Klitzman: With you.

Caryn Hartglass: … opposite me, and you were fabulous.

Dr. Robert Klitzman: As were you.

Caryn Hartglass: And it doesn’t say that you were the Golden Age winner in high school.

Dr. Robert Klitzman: With my co-winner, yourself.

Caryn Hartglass: So I thought I’d mention those things. Yeah, I’ve known Dr. Klitzman – Bob – for a long time. And I’m really so overwhelmed with the great work that you’ve done, and we might get to it, but I loved your other book, When Doctors Become Patients. It really resonated with me. Okay! So, let’s just jump into this whole gene thing. What are bioethics?

Dr. Robert Klitzman: So, bioethics is the field that looks at the ethical, social, legal, psychological implications of advances in biotechnology. So, we have a huge amount of biotechnology that has been developed. Pharmaceutical companies are multi-billion dollar corporations. Biotech companies are multi-billion dollar corporations. They’re discovering all kinds of things, putting it on the market, and there are all kinds of difficult ethical, political, psychological, legal, and social implications of this. Some of these things are great for health, some are problematic, and we try to sift through these, and look at what’s good, what’s bad, how we can make technology better, where we need to be more careful about it, etc.

Caryn Hartglass: I’m glad someone’s doing it!

Dr. Robert Klitzman: Thank you.

Caryn Hartglass: Well, the last fifty years have been incredible in terms of what we’ve learned in the medical world with technology. It’s all moving very fast. At the same time, we know very little. And some of it can be helpful, like you said, and some of it can be dangerous because we don’t really know very much, and for individuals who have a disease, or learn they’re high risk, it can be really, really frightening. And this is where genes may, or may not, come into play. And we’re slowly learning more and more about genes. So, let’s jump into some of this.

You talk about three diseases in your book: Huntington’s disease, Alpha, which affects the lungs and breathing, and then breast cancer, and they have some things in common, they’re different in other ways. Huntington’s disease, my understanding is if you have the gene, you’re pretty much doomed, there’s really no cure and you’re going to see symptoms some point in your life. And then Alpha is similar, but there are ways to manage it for a certain amount of time?

Dr. Robert Klitzman: Right. So Alpha-1 antitrypsin deficiency, or Alpha-1, is an enzyme deficiency, and there, we’re actually able to give people the enzyme. It’s an enzyme, sort of naturally occurring enzyme, but people, some people are born deficient and we’re able to give it to them, so there actually is treatment.

Caryn Hartglass: As long as it’s in supply.

Dr. Robert Klitzman: Yes, exactly. As long as it’s in supply, and there’s questions about drug companies, whether they have been filling the supply as much as possible. There’s a whole set of issues around drug companies. But it would be an example, I would say, of a case, one of those cases – and there are few of them – there are rare diseases for which a genetic test can diagnose something in which there is a treatment. And those are very few diseases. Most diseases that most of us will get in our lifetime do not, at the moment, fit in that category, where there’s a definitive test and there’s a treatment that you can get as a result.

Caryn Hartglass: And then the third one is breast cancer, which is very different. There are some that believe that there are genes that really increase your risk for cancer, and some that believe it’s more environmental. There’s a whole mix as to how we get cancer in general, and breast cancer. So you talk a bit about that, and so we’ll touch on a number of these different things.

One of the things about Huntington disease, let’s say, and you touch on this in your book, is when you know that you have a risk, what do you do about it?

Dr. Robert Klitzman: Right.

Caryn Hartglass: And who do you tell? Do you have children? I know, I have two friends, and one of them, one couple had a child with, um, who was a hemophiliac. And they decided to have another child. And then I have another couple, and their daughter was born deaf, and it was a genetic thing that both of them had, and they decided to have another child. And I thought it was interesting in reading your book because I think both of them made this choice because they knew what it was like already, and they knew how to handle it, and they knew how to manage it, and so they made informed choices. Whereas if someone finds out they have the gene, and they don’t know what it means or what to do about it, they might make a very different choice.

Dr. Robert Klitzman: Right. So a major issue through all this is the need for education because genetics are fairly new, in terms of our understanding of them. It was next year is the 60th anniversary of the discovery of DNA. And the amount of information that we have is going up every year. So, ten years ago for the first time, researchers were able to sequence the three billion letters – molecules – lined up that make us right. So, we’re just… and a lot of it we don’t know. Up until a few weeks ago, it was thought that 40% of DNA is junk. Well, it’s not junk. We are now finding out that it does do things. But the problem, as you say, is that we know very very little.

The equivalent is if someone asked in 1500, what happens if you sail west? Oh, you hit some islands just off the coast of India. Well, they weren’t islands off the coast of India; they were two huge continents, lots of people living there. It’s a whole other ocean between that and India. So we really know very little, and the problem is that people look for answers, people want answers. So, you have the media sometimes having headlines about the alcohol gene, the obesity gene, the fat gene, the gay gene, the intelligence gene, etc. So, there’s a lot of hype out there. You also, the fact that companies are able to patent genes, patent genetic tests, and so you have companies that hold patents that raise concerns because they could be over marketing tests because they get money out of it. And so we basically have a tsunami of genetic information come at us, and we don’t yet know what it means, how to digest it. People we know misunderstand it. Doctors, we know, often misunderstand it. And so people are often befuddled, and we also have a lack of genetic counselors in this country. There’s only 1800 genetic counselors in the whole United States, and that’s because a lot of insurance companies don’t reimburse for genetic counseling. So a lot of doctors treat a genetic test like it’s any other kind of test with a definitive answer, and of course, it’s not.

As you say, it said right in the book, Am I My Genes?, genetic tests are sort of a Rorschach, so that people interpret them in different ways, and very often with breast cancer, it’s their right to. So we know, for instance, as you say, about 5-10% of breast cancer is considered to be the “genetic kind”, quote on quote. And that means that we have found two genes that are associated. And if you have one of two genetic markers, you have between a 40-60% chance of getting breast cancer. So that means, let’s say it’s 50-50; you can have the gene, the mutation, and never get breast cancer. Or you cannot have the gene, and get breast cancer. So it’s kind of complicated statistics and we’re not good at dealing with these types of numbers, and there are concerns that people may not make informed decisions at times, and may opt for treatments that may not be right for them.

 

Caryn Hartglass: I’ve got a lot of questions here based on everything you’ve just said. Let’s start with genetic counselors. So, I had ovarian cancer as you know, six years ago. And I’m now writing a book about it. And so, I was reading some of my doctor’s notes, and I was really amused to read some of these things, because there are some things in the notes they said we talked about that we didn’t talk about, and I’m sure it’s in the notes because, I don’t know, he thought he talked about it, or he wants to cover his butt, whatever.

But I did have the BRCA test, and I had it because my sister wanted me to have it. And my doctors at the time were saying you don’t need to have it, it’s not important, and they kept just trying to change my mind about it. And my sister wanted me to have it, and she needed me to have it in order for her insurance company to approve for her to have the test. I was just, you know, in the midst of my treatment, and I didn’t want to think, “Another test? Yeah, sure, take my blood, I don’t care.” But I didn’t know anything about genetic counselors. And in my notes, I read, that they said they recommended that I go and see a genetic counselor, which I didn’t do. I later found out that I don’t have the mutation, I have some other mutation, but it’s not supposed to be one associated with risk or these risks.

So, first, what are genetic counselors, and are they required?

 

Dr. Robert Klitzman: So, those are great questions. So, I think there is a huge need for more genetic counseling, and I think that insurance companies should be encouraged through policy to have genetic counseling. Because genetic counselors are supposed to take a completely neutral position, because a lot of this is very complicated and for most genetic counseling, there is no right answer. Should you have the test or not? There’s no right answer. It’s not like other tests that we’ve developed over the years. If I have an X-ray done and I have a broken leg, you know, I need a cast, right? There’s not much ifs, ands or buts. Or if I have anemia, I have a low blood cell count, it’s clear we need to do something.

 

Caryn Hartglass: Right.

 

Dr. Robert Klitzman: So, for genetics, we have this information, and don’t always know what to do with it. The equivalent is, let’s say, do we really need to know what’s inside a cell phone, how it works? Or is it enough to know you turn it on? Now in some ways, in other words, genes underlie a lot of disease and at some point, they may tell us a lot that could be helpful. At the moment, for most diseases, as I said, it’s still limited. I’ve not had my genome sequenced. But again, you have companies out there, online now for instance, that say just wipe the inside of your mouth with a swab, like a popsicle stick, put it in the mail, and it’ll give you the many genes that you have information. It’s considered to be pretty much useless information, and these companies are being investigated, but companies are making money off of this.

And the test for breast cancer, the mutation, the patent for those genes is owned by a company, Myriad Genetics. They discovered how to isolate the gene, etc. They have the patent. To run the test costs 50-100 dollars, let’s say. They charge three to five thousand dollars…

 

Caryn Hartglass: Right.

 

Dr. Robert Klitzman: And the money goes to them as profit for intellectual property. And I think that’s problematic from a public health point of view. We need some patents often to incentivize research, but how much? Is that too much? Do many people think that’s too much? I think those are the questions that we need to have discussions about in our society and that’s why I think it’s great that you’re bringing up these topics now.

 

Caryn Hartglass: I had no idea that test was so cheap; ‘cause I know it cost me $1000!

 

Dr. Robert Klitzman: You got off easy.

 

Caryn Hartglass: But I got a deal!

 

Dr. Robert Klitzman: Right.

 

Caryn Hartglass: Or maybe it was… no, no, no. Oh, I don’t remember. A thousand, five thousand? I was looking at so many crazy numbers during my treatment. I’m going to have to check that though. Do you know how Myriad Genetics determined the risk of getting breast cancer or ovarian cancer based on if you have these mutated genes?

 

Dr. Robert Klitzman: Right. So there’s two questions. There’s the research that went into their identifying the gene. And as I understand it, what one would do is you would look at families where there’s a lot of breast cancer, and you would see, for instance, and then you could look at members of those families that don’t have breast cancer, or other families, and see what mutations, what genetic differences, there are in those families versus others.

Now, once we’ve identified that, we can then look epidemiologically though. Let’s say we look at ten thousand women with breast cancer. We can see what percent have the marker. Now, what’s interesting with breast cancer, and I think getting back to the points you raised earlier, is given that it’s 50-50 if you have the mutation whether you’ll get breast cancer ever, the question is what’s the other 50%? And women I interviewed for the book, for instance, would say, “Oh, you know, I knew I shouldn’t have lived in that terrible apartment and stayed in that awful job all those years. That’s why I have breast cancer.” I’d say, “Well, you have the mutation.” And they’d say, quite rightly, “Yes, but it’s the stress of that that caused it.” And they may be right.

There were African American women I interviewed in the South Bronx who would say, “You know, it’s all the crap they dump in the landfills in the Bronx that they’d never dump in Manhattan where the rich people live.” And that too may be right. But again, people are forced to engage in what I call personal epidemiology, where they try to make sense of these things for themselves. One woman I interviewed said, “You know, I’m from New Orleans, and everyone I know in New Orleans has cancer. So it has to be something they put in the water.” There again, she may be right.

So we live in a society, at the moment, where there are lots of potential toxins around, where the foods we eat can contain toxins, etc. And these things can potentially contribute, in some ways, to our developing cancer, breast cancer, etc. So, now it’s tricky because my own feeling is you can’t say genes are of zero importance. I mean, our genes make us who we are in many ways, but they don’t determine us. And just as in the past, there have been debates of free will versus determinism, the answer is somewhere in the middle. And those are hard answers to grapple with. People often, I find, want to say, “Oh, it’s my genes. It’s not my fault. It’s not because I smoked” or “It’s not because of my genes, it’s that terrible relationship I was in, or it’s the stuff they dump near where I live.” So, the problem is psychologically, I think people look for something to blame, some way to make sense of their lives and what’s happened to them. And they map that on to this area in which we know a few things, but not a lot of things at the moment, which is genetics.

 

Caryn Hartglass: Making sense of a disease is important to the individual. I know, I think about it all the time.

 

Dr. Robert Klitzman: Yes, absolutely.

 

Caryn Hartglass: And I, you know, this may sound a little out there, but I think- I think our bodies know why we get ill. And there’s a trick to tapping into the knowledge that our body has somehow communicated to our body to find out the answers. And some people are better at it than others. So, some people may think that they know why they got something and their bodies know, that’s all I can say about that. But I really think it’s a layering of different things.

One thing that I’m fascinated with is the fact that in our grandmother’s womb, our mother was made. And when our mother was made, her eggs for her future children were formed. So things that are related to us now started in our grandmother’s womb.

Dr. Robert Klitzman: Yes.

Caryn Hartglass: So, there’s genes involved there, but there’s also all that environmental stuff that’s related to that woman in that time, and her stresses, and it all factors in.

Dr. Robert Klitzman: Absolutely. So we also know, as you’re suggesting, that stresses, things in the environment, extreme stress in particular, can affect the expression of genes. So, it’s not like it used to be thought genes were like piano keys. If you press one, you get a C no matter what, if you press another one you get E no matter what.

Caryn Hartglass: If it’s in tune.

Dr. Robert Klitzman: If it’s in tune. But we now know it’s much more complicated than that and that there are other biological processes that regulate genes: which ones turn on, which ones turn off, when they turn on, when they turn off, what makes them turn on, turn off, etc. The other thing that you mentioned that I think is important is that the role of spiritual issues – I’ll use the term broadly – or non-scientific – quote-on-quote – aspects of illness or psychological factors. And as you know, I wrote a previous book When Doctors Become Patients, and there I found, again and again, a number of physicians told me that patients used to pray for them, used to say “Doc, would you pray for me?” and they’d say “Yeah, yeah, whatever” and they’d poo-poo it they’d tell me, and then they became patients and realized how important those issues were. And some became more spiritual, some said, “You know, I wish I could become more spiritual, I see it helps my patients, I’m just too much of a scientist.” Some were depressed as a result of that. Sometimes I think depression can make you less aware of those issues.

But I think more broadly, a hundred years ago, healing was a more spiritual, holistic enterprise, was more closely tied to the scientific aspect of medicine. In fact, a few years ago, I went to Epidaurus in ancient Greece, which was the center of Hippocrates, the center of healing. And there, it’s now known most because there’s a theatre; it’s the most intact and largest theatre from the ancient world in Epidaurus. But it turns out that the theatre was part of a healing complex. And in this, in this compound was a hospital, a temple and the theatre. I thought what a wonderful combination to have: not these things separate, but together – have the hospital, the theatre and the temple.

And I think what happened is in the 19th century, as science developed, Western medicine said it had to distance itself from what it saw as quackery and say “No, we’re different as physicians. We’re scientific and we reject all that other stuff as quackery.” And in fact, I think the experience of patients and these physicians that became patients as I described in the book, is that these things are much more closely tied. That if you’re a patient, you’re dealing not only with the scientific process, but you’re also dealing with the meaning of this; what it means and how much your body knows or doesn’t know, or how you feel about it. And I think there’s a whole range, whole range of issues that are part of the experience of illness that unfortunately a lot of Western medicine ignores. And I think that comes through in the focus among a lot of physicians on genes; that if that is the answer to a lot of medical problems, where it’s really gonna be a complicated mix of things.

Caryn Hartglass: It’s like you mentioned before about the 1500s, the way people perceive things. Today, there are things people talk about; we don’t understand them, they may seem like quackery or magical, but we don’t know anything. There are conversations now about cells and organs having memory. And are you familiar with Dr. Bruce Lipman?

 

Okay, so he is a biologist and he came out with an audiotape and a number of books, but the audiotape that I listened to is called The Wisdom of the Cells. And it was given to me while I was going through a treatment, and it was literally one of my lifelines because he talked in a scientific way, I mean maybe some scientists would say he’s a quack, but he talked about evidence he found that our cells – our 53 trillion or more cells – in our body respond to the environment they perceive. And that was so profound to me because that meant that I am God in my body and I had – to some degree – control over myself because they perceive what I’m telling them to perceive.

Dr. Robert Klitzman: Right.

Caryn Hartglass: And, at that point, I really shifted a lot of my energy. I started meditating twice a day; I was putting in a lot of focus in to what I was saying to myself, and how I was saying it. And I really focused on saying things from a positive point of view instead of a negative point of view. Rather than saying “I want to get rid of the cancer,” I didn’t want to focus on cancer. I said “I want wellness” and I’d focus on wellness.

Dr. Robert Klitzman: Right.

Caryn Hartglass: And these are really subtle things, but it worked for me. And I think that they’re really important.

Dr. Robert Klitzman: No, we know a lot more now about positive thinking, the importance of positive thinking, the way in which our thoughts can spiral down if we start in a negative trajectory, we stay that way. And positive reframing is extremely important to how we frame an experience very much shapes how we then experience what happens. And the mind is an extremely powerful – to say it’s an organ is to denigrate it in some ways – part of our bodies, and has an enormous power. And I think that this is an area that we need to work more on, to understand how we can help patients deal with a lot of issues, because a lot of patients don’t get access to, there’s books or ways of thinking about their illness beyond what their physician tells them, and the physician may stay with a very medical model. Now, that’s not to say that all physicians should start preaching other things, but I think that we as providers, and our patients, are best off when we realize that healing is not just about science, and that there are many other psychological, personal, spiritual if you will, aspects that are important to ourselves, our lives, our getting over disease.

Caryn Hartglass: You know, I have a science background, I majored in chemical engineering, and data is really important to me. And when I was going through my particular – you know, it’s all about me, I say it’s all about food, but it’s all about me. But when I was going through my own illness, I was, I had an Excel spreadsheet of all my lab results, of everything I was collecting and charting, whatever. And there’s a cancer marker for ovarian cancer – CA125 – and I was plotting my results as I would get them, and before I started into my third surgery, I was in a total panic because everything was out of control. And I started my meditation, and I was fortunate at that time, my insurance wasn’t really keeping track of my blood tests, and I didn’t have to have a prescription for it. So I went in every week for four weeks, and got my blood marker. And, okay, I know it’s not enough data but for four weeks, my cancer marker went straight down. It was a straight line, it dropped 30%, and I knew that would only go down if you had a treatment that worked, and the only treatment I had was meditation. And I went into my third surgery feeling so empowered, like “I matter” and “I’m a part of this picture” and I’m going to get well.

Dr. Robert Klitzman: Right. Well, so we know that anxiety and depression for instance, affect the body in a lot of ways. And I think part of it is anxiety and depression are physiological experiences, that they’re biological experiences and they can impair the immune system, we think. So, I think that’s part of it, as well as feelings of empowerment, or other ways your mind may be able to influence what your immune system is doing.

 

Caryn Hartglass: I want to get back to genes, because that’s what we’re talking about today, Am I My Genes?. And with this BRCA test, it comes out with these numbers, these statistics, and another book I was given during my treatment was called Remarkable Recovery, and it made me realize that I am not a statistic. And that, the thing that I thought was unfortunate in reading this book, it talked about one story after another, all anecdotal, that people had spontaneous remissions, they healed, and it was a big mystery. And I kept thinking, “Why aren’t we studying those people to find out the magic?” I was reading about my own, and I discovered that I had a 10 to 20% survival rate, and that was really frightening, okay?

Dr. Robert Klitzman: Sure.

Caryn Hartglass: Then all the sudden, I had this little epiphany, and said, “No, I’m going to be one of the 10 to 20%, that’s all!”

Dr. Robert Klitzman: Right.

Caryn Hartglass: But you have to figure out what makes that 10 to 20%. Why are those people winning? Why are those people surviving? And the same thing when it comes to genes. Even with the BRCA test you said there’s a 40 to 60% chance of going one way or the other.

Dr. Robert Klitzman: Yes, and I think the notion that we are able to control our lives is very important, and can be empowering, and these are very important issues. I think if we say, you know, 20% of people will survive, 80% won’t, let’s say those are the numbers. You know it’s important not to feel automatically that one is in the 80% category, and that obviously some people are in the 20% category. And if you’ve been in good health otherwise, you’ve been exercising, if you’ve eaten fairly healthy, if you’re not obese, you know that can help put you in the 20% category. We don’t know, maybe people who are older, who are smoking, who are obese, in the 80% more likely to be in that category. So, it’s important not to feel fatalistic, I think, about one’s chances. And what I found in the book is that people had a need to try and believe there was hope. Hope is very important to all of us. People wanted to avoid despair. And there’s a problem in that genes can be seen by some people as being your fate. I think they’re not, I think that we can have control over many parts of our lives that can influence what our genes do. Now, that being said, obviously for some rare conditions, such as Huntington’s disease, if you have the condition, unfortunately you’ll die of it, but for most common diseases, they’re mixed in terms of what causes them. Whether it be diabetes, or whether it be heart disease, cancers, depression, etc., there are genetic components but there are other things. It’s sort of like predicting the weather; we can’t even predict the weather well!

Caryn Hartglass: God, we’re so terrible at that.

Dr. Robert Klitzman: Right! The weather will be 30% chance rain. Well, presumably, if we’re in New York, whatever it’s doing today in Washington D.C. is what we’re going to get tomorrow, but even then we don’t know, because there’s all kinds of factors involved. So, if we can’t even predict the weather well, why do we think that we can predict most common diseases well? I think often it’ll be like predicting the weather, we may be able to say there’s a 30% chance of rain, and I believe there’s a 30% chance of rain, whatever that means. You know, that that has some meaning, some validity.

Caryn Hartglass: Mmm hmm, you’ll take an umbrella.

Dr. Robert Klitzman: Right. But you can just take an umbrella. But the point is there are a lot of uncertainties, we need to realize that and appreciate that. We need to have more genetic counseling; we need to have more education about that to educate doctors, patients, etc.

Caryn Hartglass: You know, we all have the same disease, maybe it’s a disease, I don’t know. But life, nobody gets out of life alive. So it is a gene, a self-destruct gene that we all have that will be discovered in the junk DNA?

Dr. Robert Klitzman: Well, you know, I’ve been to lectures, and there are people that say soon everyone will live to be, the average life expectancy will go up to 120 or more. I’m a little wary of that. I think that we did not evolve to do that, I think you start to have a lot of things go wrong here and there. But I think we can live as healthy as we can, but invariably, we all die of something.

Caryn Hartglass: Right.

Dr. Robert Klitzman: Part of the problem is some people – this is another issue in our healthcare system – feel that we can, and should, keep them or everyone alive as long as possible, no matter what. And I think at a certain point, there are diminishing returns, and that’s a whole other issue given the fact that most people spend most of their lifetime health expenditures in the last few months of their life. And I think most people, if you asked them in advance where they’d want most of this money spent, they wouldn’t say spend it on the last few months of my life; they would say spend it on my children, my education, whatever else it is. So, I think we need to incorporate these insights more broadly into our health policy.

Caryn Hartglass: Okay, we have to take a quick break, so we’re going to be right back to talk about genes, Am I My Genes?. I’m Caryn Hartglass, this is It’s All About Food, and stay with us!

Hello! I’m Caryn Hartglass, and this is It’s All About Food. And I’m here having a great time talking with my old friend Bob, and you get to listen in! Dr. Robert Klitzman is my guest, and he is the author of Am I My Genes?, and that’s what we’re talking about, confronting fate and family secrets in the age of genetic testing. So there is some really painful and uncomfortable things that happen with genetic testing, and you talk about that in your book. Let’s cover that now in terms of insurance, health insurance, life insurance, privacy issues. I was just like, broke my heart reading all these things, people have to worry about their illness, and then there’s all this other stuff.

Dr. Robert Klitzman: Yes. So it’s unfortunate that that is the case, but it is, so we are lucky that we have in this country the Genetic Information Nondiscrimination Act, which was passed by Congress . . .

 

Caryn Hartglass: GINA!

 

Dr. Robert Klitzman: GINA.

Caryn Hartglass: It’s a nice acronym.

Dr. Robert Klitzman: Yes, it is a nice acronym. Unfortunately, it’s more limited than many people think it should be. So, it covers health insurance, but it does not cover life insurance or disability insurance or long-term care insurance. So that means if you apply for life insurance, they can say, “Have you, or any member of your family, ever had a genetic test? If so, what was the result?” etc. And they can say, “Well, you have the mutation for breast cancer, we’re not going to cover you.” And they’re completely within their rights to do so.

Now, one problem with that, I should say, is that the cost of sequencing our whole genome that is the three billion molecule-chain of four molecules abbreviated A-C-T-G – adenine, thymine, cytosine and guanine. The cost of sequencing that ten years ago was one billion dollars, and in the past ten years, the price has gone from one billion to a hundred million, to one million to a hundred thousand, to ten thousand, so it’s now less than a thousand dollars.

Caryn Hartglass: Wow.

Dr. Robert Klitzman: So, soon, I should say now, if you walk into the door of the Mayo Clinic today or Vanderbilt University, they will take an extra bit of your blood to sequence it to have your whole genome there. And every other medical center in the country is trying to do this as well, to create these bio-banks. So, at some point in the future, maybe ten years away, probably, when you go to your doctor, they’ll have on the computer screen in front of your doctor, your complete genome there that will say whether you have genes associated with breast cancer, perhaps Alzheimer’s, autism; these are all small percentages, but all this complicated information will be there. And that’s scary, because that means that doctors may end up ordering tests, or people may ending up thinking “Well, 20% chance of Alzheimer’s, I might as well go jump off the roof”. Or they might think “20% chance of autism for my children, I won’t have any children”, or whatever. So people may make decisions that may not make sense objectively, so to speak, these are complicated things to deal with. And insurance companies can also use this for discrimination, and they can then say, “Well, if you want life insurance or disability insurance, we want to see your genome”. And they may say “I’m sorry, you can’t have insurance for this or that”.

So, as I describe in the book, one woman, for instance, realizes that she had mentioned to her doctor that she’s at risk for Huntington’s disease, and therefore her children may be. So, she went to the doctor’s office, she asked to see her chart, she was given this big paper chart, and she went into a little room, and she pulled out every page that mentioned Huntington’s disease, and folded them up and put them in her pocket, then walked out the door. So, now, the problem with that then if she goes to see the doctor, there will be pages missing from her chart, which I’d argue is not the best thing in the world. But again, the problem we get with insurance companies then may be shifting the way people respond to this information, whether people get this information, and even in disclosure. So, people told me even their sisters would say “Don’t tell me if you get genetic testing, or what the result is because I don’t want to know, ‘cause then if I’m asked, I can say I don’t know”. Other times people said “You have to get tested because I want to get tested, and I’ll only be able to get tested if you have the gene” or “My insurance won’t cover me to be tested, but your insurance will, so you should get tested” and the person may not want to get tested or parents might say “I’m going to test” so you make sure you get yourself well-monitored, etc.” So, again, the fact that insurance companies are set up the way they are is driving a lot of discussion that happens within families about being at risk, etc., and I think that is unfortunate.

Caryn Hartglass: It is. And it’s unfortunate; it’s so difficult dealing with insurance companies to begin with when you get sick—whether they are going to cover something or not and just to add genes in the mix is a total nightmare and that is why we need universal health care!

 

Dr. Robert Klitzman: Yes, I agree. Here here!

Caryn Hartglass: One day, we’ll; get there I really think we will—hopefully in our lifetime.

Dr. Robert Klitzman: Hopefully everyone will vote for…

Caryn Hartglass: Someone who would come up with something like that.

Dr. Robert Klitzman: Yes, someone who would support that. Not mentioning any names.

Caryn Hartglass: Okay, so, one of the things, probably the biggest thing, that irks me in this whole discussion is food, I believe, is really important and there are countless studies, I have a few of them here, that talk about how certain foods significantly reduce the risk of breast cancer and other diseases and, yet, there is not enough of this discussion in the medical profession and in the media. I ask myself ‘Why is this?’ because I want to believe that all doctors really believe in the Hippocratic Oath and want to heal people. But, I know that with the insurance companies coming in it makes things more difficult to treat patients. There’s a lot of issues involved but there’s this money thing that is involved. There are non-profits that are talking about cancer care and cancer research and many of them are funded by companies that create products that are not healthy and are cancer-promoting. Then there is the pharmaceutical industry that benefits from us taking drugs and not benefitting from us being well. There are diagnostic equipment companies that benefit from us being tested and not being well and all of this adds in to our individual treatment and in some ways it is kind of criminal—the bottom line making people well is really what should be the priority and it isn’t. So food is really important, I know this, and it was part of my healing and I know that when I talk to some people who really need this information they don’t believe it because they haven’t heard it from their doctor.

Dr. Robert Klitzman: Right. So we need to improve discussion about nutrition in medical school and medical training is one.

Caryn Hartglass: How many hours did you have?

Dr. Robert Klitzman: Yeah, well there was no required course in nutrition so some students, on their own, set up an optional course in nutrition but there was no required course, is one. And it’s also a problem doing research on it. So, as you say, for good or bad we live in a capitalist society and to do research you usually have to have someone pay for the research. It’s not cheap to do, it takes time, it takes effort, it takes collecting data. If you look, the people who pay for the research are usually the people who are going to benefit from the research so that’s complicated. And the problem, also, is I would argue that within NIH for instance, my sense is maybe not correct, and I hope I’m wrong, that NIH is looking for the highest possible quality science and there’s a push for innovation. And I think that, therefore, in cross medicine there’s a push for high-tech because that’s new, high tech can do the same benefits…

Caryn Hartglass: It’s sexy!

Dr. Robert Klitzman: It’s sexy, etc. But I think, and I don’t mean to fault NIH and NIH does have an institute for complimentary alternative medicine but I think there definitely needs to be more work done on this. I think back to a young medical student I know who said that he was interested in studying yeast and the effect of eating yeast on health and a medical school supervisor or his said, “Don’t do that, it’s not good for your career. You should find something else.” Meaning a drug…

Caryn Hartglass: Right, something you can patent, something you can profit from.

Dr. Robert Klitzman: Right, something more traditional. So there is this, I think, focus on medicine towards the high tech. I think that is what has been rewarded in the system. So I think we need more data on what is the effect of food, particularly food additives, I think there’s a lot of chemicals in what we eat and in our environment and I think those probably do have an effect on a lot of health issues. Some of that is hard to tease out. So, for instance, if I ask someone, “What food have you eaten? When? And what quantities?” it’s very hard for people to…

Caryn Hartglass: To remember…

Dr. Robert Klitzman: To remember over time, how many times have they had hot dogs? Who made the hot dogs? Were the kosher hot dogs? Were the organic hot dogs? Sometimes who knows? So these are complicating issues.

Caryn Hartglass: There is a lot of research out there. We need more, but there is plenty already and I know that many doctors don’t even want to look there or they don’t have time to or they’re not interested. There’s a lot of evidence out there and, sure we need more, but there’s a thing about education.  And there’s also, and maybe you should do a book about this one, there are blinders in terms of food and certain kinds of food people don’t want to believe certain food are not healthy. And when you say there is science that shows that it isn’t, especially when it comes to animal foods, people have a reaction, a gut reaction that is not explainable where they just won’t believe it even if they are really intelligent scientists and you have the information for them they don’t want to believe it.

Dr. Robert Klitzman: Right. I should say I think there are strides being made with fat intake, for instance, and the fact that we do have an obesity epidemic in this country. There are a number of public health officials and, even Mayor Bloomberg here, who has tried to push for healthier diets, but again, there’s opposition. If you look who funds…

Caryn Hartglass: The beverage companies…

Dr. Robert Klitzman: The beverage companies, there are fast food companies that are very wealthy at this point that you know, you don’t see ads on TV for eating lettuce…

Caryn Hartglass: No you don’t.

Dr. Robert Klitzman: You see ads for eating greasy things that are not healthy, have lots of starch, lots of fat, who knows what else that are from whether it’s Domino’s Pizza or McDonald’s, or Burger King and I don’t mean to pick out any one company but those are the foods that you see on TV being advertised…not “eat celery!”

Caryn Hartglass: And people respond to those advertisements ads and marketing companies know that. There was one study that came out of Canada and it wasn’t about healthy eating it was about weighing the value of Internet marketing versus print marketing and television marketing and they put an ad on television for broccoli and people started eating more broccoli and that’s the part that I picked out of the article. But we need to have more education, we need to have media that supports healthy food, there needs to be a profit incentive for all of this. I have a favorite medical doctor, Dr. Joel Fuhrman. I had his daughter on my show last week, which was really phenomenal—the dynasty of these people for healthy eating. But he has a formula for super immunity and it’s based on green foods, onions, mushrooms, beans, berries, and seeds and he recommends a diet based on these foods because it super charges your immune system. And yet you go to events for cancer or you talk to intelligent women who have had breast cancer or want to avoid it and they think they’re eating healthily—they’re eating yogurt, they’re eating organic chicken they’re eating organic eggs and they think that these food are going to help them and there is tremendous evidence now that it’s not going to help them and that there’s other foods that boost the immune system and these foods that they think are healthy may actually be increasing their risk

Dr. Robert Klitzman: What my own sense, getting back to what I think you said earlier about TV ads, is part of the problem, I think, is that when humans evolved there was a shortage of fat, a shortage of salt, a shortage of sugar or those things were in relatively low supply, so we evolved such as we crave fat…

Caryn Hartglass: Salt and sugar…

Dr. Robert Klitzman: Salt and sugar. So when we see these ads for chocolate, or for greasy hamburgers it’s appealing to very deep parts of our psyche. I think that is part of what we need to overcome. It’s no mistake that people gravitate to these sorts of things, chocolate bars are on the TV and these others things whereas broccoli is not because, in fact, we had a lot of greens around us when we evolved.

 

Caryn Hartglass: I talk about evolution and evolution of the human race and I think history will look back on this time. I think we’re in a stage of evolution—we can see it now because it’s going to take a long time but our DNA has to change in order to change this programming in us for fat, salt, and sugar. But there are a lot of us that have gotten over this calling or whatever it is because we know what these things do to us and we have adjusted our taste buds so that we don’t like extra salt, sugar, and fat and we know when we see that ads on TV we know what they are—they are not truth they are marketing to brain wash us.

Dr. Robert Klitzman: Right. Well those are great points and I think more education like that is important and hard because you have a barrage of ads coming at us pushing us to do the opposite.

Caryn Hartglass: Who should read this book?

Dr. Robert Klitzman: Well, I think everyone should read it! We all have genes. Our genes all effect us in many ways—hair color, eye color, but, also, potentially our risk of certain diseases. Genes are going to be marketed at us, whether we like it our not, and often, unfortunately, we’re going to be given genetic information about ourselves and our family members. So, in ten years from now I would guess when you go to the doctor, they will be doing genetic tests for all kinds of things. Partly to see our response to different drugs—it’s not all evil. But there’s a lot that most of our genes we don’t understand and I think to begin to understand that is important. And to understand, also, how people deal with that. So, as I say in the book, people ask questions like “Okay, I know I am going to get Huntington’s disease because I have this gene but what gave me the gene?” Right. “Did God give me this gene? Am I being punished? Is this my fate? Am I doomed? Am I cursed? Am I my genes? What am I? Am I a mutant? Am I sick? No, I’m not sick I’m healthy but I have this gene. What does this mean?” So I think we need to prepare ourselves to begin to deal with difficult questions. In other words, this is information that, whether we like it or not, is coming at us like a tsunami and we need to prepare for it. It’s not all good information, it’s not all useful information it’s not all “clinically actionable” information. Some of it may be helpful for some people in some ways but we’re going to be deluged by it and we need to get ready for it and begin to understand it and think about it. And two, even though genetic diseases are rare, there are tests for certain diseases and someone we know is going to have genetic tests. The other thing I should say is there’s been a great advance in assisted reproductive technologies…

Caryn Hartglass: Ah, yeah.

Dr. Robert Klitzman: So people can now screen embryos. Women who are pregnant can now, with a little sample of blood from their arm, can see various diseases that their fetus may have this creates a whole other set of issues. Whether they should continue pregnancies, whether they should abort pregnancies, when, what do we do with uncertainty with this. Again, these are tests that are being marketed. Companies are making money off these tests. But, again, we need to begin to think about these issues and have discussion like this about it so we can prepare ourselves.

Caryn Hartglass: I wanted to bring this up before and so I’m going to bring it up now that you talk in the book about terminology sometimes there is language that doctors use and then patients use about their illnesses and something that drove me crazy, being called a cancer survivor, the word that I think I hate the most is recurrence because it just implies that it’s inevitable that it’s just going to happen again and I just fought using these words and would talk to my doctor and say lets not call…well, for my own personal thing, I had surgery they removed some stuff and there was a little left over and I called it a residual but later things people were calling it a recurrence. It wasn’t a recurrence. It was there all the time. And I kinda feel that way about recurrence in general. People may have had a certain portion of cancer removed but there is still some left in their body and you just don’t see it until it becomes big enough and that’s why it’s so important to take control and responsibility and to look at your life and not blame yourself…

Dr. Robert Klitzman: Right, correct.

Caryn Hartglass: For being at fault but just get proactive and think, “What do I need to change to

Dr. Robert Klitzman: Yes.

Caryn Hartglass: So the language…

Dr. Robert Klitzman: Absolutely and unfortunately that’s something we don’t teach much in medical school about language. So, for instance, in my earlier books, When Doctors Become Patients, that when doctors say that we’re going to run “normal tests” or “routine tests” and they’re going to say whether or not the cancer has come back—they’re routine for the doctor they’re not routine for the patient but we call them “routine tests” and the language we use or doctors would say these doctors that had become patients would tell me stories that their doctor would say to them things like “well your cancer shouldn’t come back too soon.” Well, what’s soon? So there’s lots of vagaries. Lots of…

Caryn Hartglass” Yeah, “Maybe we can do something to buy you time.” One of my favorites.

Dr. Robert Klitzman:  Right. Yes. So we don’t pay enough attention to the language and the language often disguises a lot of implicit attitudes, stigma, doctors often looking down at patients. There’s a hierarchy, chief doctor, then there’s the younger doctor and the resident, the intern medical student and then below them is the patient in hospitals.

Caryn Hartglass: We’re definitely at the lowest part of the totem pole.

Dr. Robert Klitzman: Yes and there’s a lot of power there. And I think we need to become a lot more aware of these things and how that even affects a patient’s sense of empowerment and their sense of what they’re able to do.

Dr. Robert Klitzman: Well, thank you. I think, also, patients would find it interesting because it helps them understand their doctors and shows how, even doctors, run into problems and find it difficult to be a patient. And they also have a lot of insights on how to best cope with the medical system. To be as proactive as you can be, to ask for definitions on time, for instance, to be aware that it’s okay for spiritual things to be part of your illness that that can be important to not be too frustrated by the medical system which, as these doctors often said to me, doesn’t work for them either when they’re patients. So I think it can be very empowering book for patients, as well.

Caryn Hartglass: Thank you, Dr. Robert Klitzman, for spending some time with me today, for writing this great book, Am I My Genes? and all your other books, and for doing all the great work that you’re doing. Keep at it! I look forward to your next book. I’m Caryn Hartglass, you’ve been listening to it’s All About Food.

Dr. Robert Klitzman: Thank you.

Caryn Hartglass: Thank you. Have a delicious week.

Transcribed by Shannon Haskins, 5/1/2013

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