Focus 580; The Book of Life: A Personal Guide to Race, Normality, and the Implications of Human Genome Project

Good morning and welcome to focus 580. This is our telephone talk program. My name is David Ensor and we're glad to have you listening this morning. In this first hour of the show we will be returning to a topic that we have discussed on other days with other guests. But from a perspective that's a little bit different We'll be talking about some of the implications of the human genome mapping project our past conversations have mostly been with people whose background was biology Sometimes scientists sometimes journalists sometimes people who actually were both this morning offer a little bit different perspective that of a social scientist. And our guest is Barbara Katz Rothman. She's a professor of sociology at the City University of New York. She is the past president of an organization called sociologist for women in society and the Society for the study of social problems. Her previous books include these recreating motherhood in labor and the tentative pregnancy. And we'll be talking this morning about some of the things the ideas that you will find in her book The Book of Life which is subtitled A personal and ethical guide to race normality

and the implications of the Human Genome Project a book that was originally published a couple of years back and now has been reissued in paperback it's published by the Beacon Press in Boston. And Professor Rothman is joining us this morning by telephone as we talk. Question certainly are welcome questions comments welcome all we ask of callers as people just try to be brief. We ask that so we can keep things moving and try to get in as many different people as we'd like to join the conversation but certainly anybody is welcome. The number here in Champaign Urbana 3 3 3 9 4 5 5. Also we have a toll free line and that one's good anywhere that you can hear us and that is 800 to 2 2 9 4 5 5 you match the numbers with the letters on the phone and you get W I L L So that's another way of thinking about it. Three three three W I L L and toll free 800 1:58 WLM. Professor Rothman Hello there. Thanks for talking with us today. Thank you.

I was struck by one of just one of the things that you write in the introduction to the preface to this this new edition and that is one difference perhaps between the way things are the way people thought about this in I think it was in 1988 when this first came out and and now is that it seemed to you that people were now more willing to question this research and its implications that perhaps people have a little bit more of a little bit more in the way of reservations about all of this. I think so I think. Hope so but I also think. When I started doing this research I started really tracking the way the public hearing stuff in the human genome. It was entirely in terms of next big miracle around the corner to cure this cancer that cancer about to live forever make perfect babies. That a new gene had been discovered for absolutely everything you know

alcoholism schizophrenia the gay gene genes for intelligence genes for anythingit water not want. And those articles are showing up quite regularly. When I sat down with the clippings I had to write the preface for the new edition and I saw that actually. The article on things to do with genes reside because themselves you know X and showing up on the business pages about patterning all of these genes and having all these tests and so on. And Americans tend to be kind of by science. I guess everybody on the planet and the kind of science and oftentimes with good reason but tends to be kind of skeptical about marketing and also often with good reason. So when the shift into a big marketing project and we begin to see what kind of money was involved what kind of hope they were for profit more than for cures or whatever I think people began to be a little more suspect.

Have to go to one of the points that you address in the book. And as you say now I think coverage of this issue addresses more and more is the extent to which it's driven by commercial concerns. Not to be too flippant but in going in looking just trying to find out if there was anything in the way of big news recently on the human genome project I was looking back here through the archives of The New York Times and came up with the story from just recently about the fact that researchers in France have in their own way trying to better the civilization that we have have deciphered the genome of cheese starter. This was the most widely used milk fermenting bacteria in the cheese industry and I suppose in their defense we would say that also it happens to be a member of the family of bacteria that includes the the bacteria that causes meningitis and pneumonia. So your more one might say well that might have some applications but in this particular case well it's just about making cheese and that it does

give one pause to think is it. Is that really what's going to drive so much of this genetic research. It is can we come up with something that we're going to be able to essentially to make money on. Sure. I think the concern with all this hoopla and all this talk of progress is really about bringing better cheese is one thing. What I think is beginning to penetrate makes people little nervous is that the same values the same marketing the same kinds of decisions the same profit motive is going to be what's driving bringing you better babies. And so the you know questions about what kind of research isn't isn't going to be followed through in human research is going to be driven by the same people making the cheese decisions. It it's certainly seems to be the case that this is an example and there are many that we have this tendency to when new technologies come along to be enthused about them to adopt them and then only afterwards

start asking this question was this really such a good thing to do. And it seems that we we have a rather bad tendency to not to ask these questions just because we can do something should we ask them before we start doing that thing. Well you've got to disentangle it about who is WE. You know well that yeah I you know I think I take your point really great idea. No actually I didn't. But the people who made them for made those machines you know keep track of the heartbeat of astronauts or whatever. There weren't that many astronauts but there were a lot of Cetus. It is in labor so maybe they could use technology for that. So then they aggressively sold it because they have this product and they wanted a market for it and they thought well what would be a good market. And then they sold it and then sure like you know sometimes 10 15 20 years data comes in. Actually it's a pretty lousy technology for a teen pregnancy. But now it's all over the place kind of entrenched. So we get enthusiastic.

You know some do some don't but certainly people who have the technology for sale can be asked about it. Well I think also it's that that is there is a media issue here there is a way in that sometimes I think when new technologies come along I think in our reporting on them we there's a little bit. Initially I think a little bit too much cheering and not enough character says and she would have got going right you know they can do that you know approach to things and that's you know that's market driven you know they don't. Suddenly issue press releases. The date is not what we thought it was going to be this isn't as good as we thought it was going to be after this isn't working. The press release is has got a new toy and come look at it. Come see it we've got something new and and sure that the press follows it. It seems that in our thinking about it maybe here again I'm thinking of the way that media talks about this in the way that it appears in the popular imagination as we think about what is it that makes us who we are. We go seem to go through cycles and swinging

back and forth between wanting to say its nature and wanting to say it's nurture and that we're now in a phase it seems we're definitely were into nature and as you say we we seem to be inclined to believe that everything is genetic. Is this do you think just another swing in this pendulum or are we at a fundamentally different place now in the way that we think about this than we have been before. That's a deal of the above. Yes you may be thinking Tesla but it doesn't go back to exactly where it was it discussed. And shift. We certainly have a more sophisticated understanding of both nature and nurture. And one of the things that's kind of interesting right now is that while on the one hand it is absolutely true that I can find 10 articles on Gene found for whatever whatever saying that whatever characteristic you want is in the genes in the blueprint pre-destination written in right there at you know at the moment of

conception. I can offer you an enormous amount of fascinating research than that going on about newborn brain development about the ways in which the very subtle notion of an environment not just an environment like you know more arsenic in our water say but even in an environment like the hormonal status of other body cells and that consequence for the brain cells for instance to look at a very micro environment so understanding of nature has shifted our understanding of environment shifted. And it seems to be an easy years story to say we have found the cause of whatever. Then to understand that most things in life have lots and lots and lots of causes. And it's really hard to disentangle and find the single thing that cause. Whatever it is you know and usually the things that we're looking for are conditions we would like to do some fiddling around with. They look for the alcoholism

genes that they could find a different way of treating alcoholism and look for the schizophrenia gene to find a way of treating them. Of course that makes some of us pretty careful after looking at the gay genes or whatever other genes with an eye towards fixing people. Well then I guess that also gets at this question a question that is does it when you take some something that we're concerned about say say that it is alcoholism and if we can identify a gene if we can say this we really know what causes this thing and this is it does that somehow reassure us does it make us feel better about that particular problem knowing that we have that kind of explanation. Well I guess at some level it must because we keep doing it we have found the gene for alcoholism. Most of my colleagues was counting the Peter Conrad and I think he said we found the gene for alcoholism 20 something times in about 15 years and we found it on the front page

of the newspaper and then we. I hated to lose it on the back that we found in last but Jean it's been very slippery. It's got along with a manic depressive chain with its chain and whatever that keeps being found in the oh never mind. So we must really want it for something one of us is do we want to because it would remove a kind of individual responsibility. My genes made me do it. It's kind of an interesting idea because much of human history has involved an awful lot of evil done to people for things that were very definitely understood to be genetic race. And saying just because people condition color is genetic. That'll make people be nice to them because if it hasn't worked so far starkly sort of a story about the politics of thinking and finding something and it's going to get rid of individual

responsibility and therefore make people treated better some of the question is then you know I mean the one of the four fronts of actual use of technology has been prenatal diagnosis. So that finding is an embryo and a test tube you know on a beach dish or an embryo early fetus in utero have the gene for whatever particular horrific disease or some condition one would not wish on anyone is kind of testing and then selective abortion that we've been doing. Some people worry that you know one of the consequences of finding genes for alcoholism obesity the gay gene whatever. When the only actual use right now might be towards not not having people born. We have this morning here as our guests on the telephone Barbara Katz Rothman She's professor of

sociology at the City University of New York and has authored a book that explores some of the implications of the Human Genome Project Her book is titled The Book of Life and it's now been reissued first came out a couple of years ago. It's now available in paperback edition published by the beacon. If you're interested in reading some of her thoughts on the issue you can certainly head out to the bookstore look for your questions also our welcome we have a call and we'll get right to you. Others are welcome the number here in Champaign Urbana 3 3 3 9 4 5 5 with toll free 800 to 2 2 9 4 5 5. Our caller here first caller is in Urbana line number one. Hello hello. Yes you're talking about being responsible for what we're doing. And certainly there is a perspective that would say that currently we are a random roll of the genetic dice. And you could make the argument that until we organize our own genome that we're not being responsible for what we are.

We're just letting the dice roll where they may and come up with what we are and we think that that's something magic. Yeah I mean some people think that what we are whatever that means is quote genetic that it's there in that roll of the dice. The geneticists are not making that argument. The Genesis arrow is talking in terms of probabilities and likelihoods and whatever. One example that I'd like to you is if you look at identical twins who have the same genome and then look at some of them more fascinating differences between. And I'm not just talking settlement thing. For instance there's one kind of diabetes that's understood to be genetic. It's caused by a way off in a different direction and I don't care if he cares there's still a German Shepherd if you're a German Shepherd. There are lots of German Shepherds. You're still a human being if you're a human being even if you're twins you know German Shepherds are very inbred. You can't buy anything for the

American Kennel Club that hasn't been inbred for generation after generation after generation for a hundred or 200 years are a long they've been doing that. Same with the roses you buy at the store in the grass you buy for your lawn right. That doesn't make them identical and nobody's talking about being identical. OK it implies a kind of level of control. It also has go back to the control issue I was saying if you get the you know one twin has the gene for diabetes the other identical twin has the same gene for diabetes if one has the diabetes especially sick with a disease the chances that the other one being. Sick with a disease you're only like 30 percent so you have the gene for it doesn't mean that you can have your not addressing Well listen if you're going to get a really obvious of the rose color please. We did not we did not good although we did not interrupt the caller and when he was making his points and I was trying to suggest to him that maybe you might let the guest speak without interrupting her but I didn't want to play that way so anybody else who's listening by the way

thank you anyway. Yeah I think Good question yeah go ahead. German Shepherds and roses and I guess cheese fermenting yeast or whatever are very inbred they're bred for a very specific purpose you know exactly what you want from them. And you know roses bred for a Centaur for shape or for color or whatever and I don't know enough about German shepherds but those two were bred for some purpose. It was an idea that they wanted from a German Shepherd that was different from what they wanted from a Maltese or something. The trick about thinking about breeding human beings would be you'd have to understand what the purpose was and what is it you want the person to be what is it we want people in that. That's where the real difference is between breeding German Shepherds and free people. Well I think also the point that the Jew made in you write about it in the book is indeed when geneticists talk about the relationship between peoples genetic make up and what this person turns. Beat that and you write about it this very well that what genetics has to offer us is a prediction and it is not a prediction of 100 percent

accuracy so one really does have to go back to this question while supposing that you decided you did want that you were wanting to do eugenics whether indeed would be possible to do that or at what level it would be possible to do that so that the end result turned out to be setting aside whether or not it's a good thing to do or not whether the end result would turn out to be what it is you wanted it to be. Yeah and when you look at breeding for a purpose the narrower the purpose the better shot at it is. You know if you have it. If you want to breed very specifically for a particular odor in a rose you can probably get there. Our notions of what we want out of people are so much more complex than what they smell like that it's really hard to put together this. It's a roll of these standards of another 10:37. It's the role of 30000 genes that interact with each other let alone with all of the environment. And so the predictions of geneticists make are always fair very much in terms of probabilities.

Let's take another call this is Terre Haute and its line number. For Hello hello. The guy was kind of following up on what you started to say right there. There's one we did far and there's a problem and try to relate to a gene the genetic system really looked at it very differently. The Mary beer involvement of several genes that may be involved are what controls the expression of the genes and things of that sort. And soy has read of foreign problems characteristics and so forth. The genetic system doesn't necessarily differ in the same way. The site I mean there is this notion that you have the blueprint that they like to call and that has followed the blueprint you know what you're going to get and if you asked 10 people out with the same blueprints to build the same cabin I'll come up with the same cabinet all off of the door in the same spot and it'll be the same cabin 10 times.

It's not the way the circus is much more complicated than that. They often like to think of it not in terms of the blueprint but more like recipes if you want to bake bread say the same recipe 10 different times sticky day we're having a sticky New York humid day today. The same bread will come out heavier and if you bake it a drier day if you bake it with. From one part of the country it'll have one kind of taste if you bake it Lee from another part of country another kind of taste that you're looking at something that's much much more complicated and nuanced and they aren't simply talking about bread but even there the interaction the environment the context in which something is created shapes what it turns out to be exactly you mention the gene for all of them. There may be very sure for interaction of several genes or so forth and so as we

define our call is that a problem. There may not be a gene. Given how many times they've lost and found and lost that gene there probably is not. I mean there's probably not ever going to be a gene for alcoholism. There's probably going to be a cluster of things that might increase the probability of a particular population having higher levels of alcoholism than another group of people and you may be able to talk like that. But that's a way different thing than saying this child has the alcoholism gene and this child run in an organ Norden at high risk of growing up to be an alcoholic. That kind of prediction or not moving towards exactly what was my point. Thank you thank you. About midway through already this part of focus 580. Just real quick Again our guest is by. Katz Rothman She's professor of sociology at the City University of New York. And some of her thoughts on the subject are in the book that we've mentioned it's titled The Book of Life The subtitle is a personal and ethical guide to race normality and the

implications of the Human Genome Project. It has now been reissued in paper by the Beacon Press is in a bookstore if you'd like to look at it. Questions are welcome 3 3 3 W while all toll free 800 1:58 W while I'm at it for a second I want to ask you to maybe amplify on something that you also read about in the book that to where you write genetics is as much an ideology as it is a science. What does that mean. Well. There's a value system here and you can hear the sort of things that the readers respond that this is about you know your first car stuff and then you think of that you know that this is a value that we must control our destiny that we must take control of the random crapshoot that is life. But the control is to be had via science that if we want a better world the way to get there is to make better people and the way to get better people is to look inside their self and get better genes. It's a real interesting. Ideology is a way of thinking that the well that's not the way the geneticists think about genetics.

OK but in our culture oftentimes you have the notion that if we wanted a better world we needed to start with a self better people and that we could do that by getting rid of genes we don't like. Alcohol is crime genes whatever. The other way of thinking about the world is the problem isn't actually the people that we've got it's the fight we've organized it and if you want to make a better world you would need to do some social reorganization. If you don't have poor people because there are people who have the gene for poverty but we have poor people because some of the ways that we've permitted capitalism to develop for instance in the United States right now these are really very different ideologies ways of thinking about how the world works with genetics as an ideology genetics as an ideology and part of America for a very long time. The eugenics movement that came into its you know whole I don't know what word to use here it's folk power I guess under the Nazis started as Americans. I mean it started out wonderful.

Bizarre quotes that just seemed so counter-intuitive that German saying oh we wish we could pass the kinds of eugenics laws the United States has but Germany would never stand for that. You know if the U.S. is so far beyond anything Germany could dream of all the way through the 20s the ideology that the way to get a better world is to get rid of these people that are not good. There are people it seems to permeate a lot of our thinking I mean I've heard people talk about you know infant mortality Oh it's very high among blacks. So what we should really do is compare the white United States with Europe and then say See we don't have a problem because then our intimate how the weights look fine. Our problem is that the structure of poverty and race in America creates and our problem is what folks that that's deeply eugenic racist thinking. And it's one of the directions that genetics and ideology. And as recently as not very long ago whenever it was the Bell Curve was published you that's not one that's not just something that one would say well

we thought that way in the one thousand twenty six. Oh I mean every actually just within the year race evolution and behavior. But I rushed in was mailed to every member of the American Sociological Association saying basically the same things that in the Bell Curve also known no new data no none of the new genetics it touches any of this because the new genetics. If you look at what the. Scientists are doing with geneticists are doing genetics tells you there's no biological category is race not a useful biological category. But there's this kind of genetics as an idea. Oh itchy kind of oh carries on the coat tails of the sun. You know they're finding genes for all kinds of things. So surely there must be a gene that has to do with and then you know you pick your your category race and intelligence. Gauging whatever you pick a category that you want. You say there have to be a gene for it because they have after all found a gene for deafness in a family in Brazil.

You know they find an occasional gene in a small place that actually seems to do a very specific thing. And if they see everything must be genetic it's got to be a gene for each and every one of our characteristics. I want to mention our phone numbers again you're certainly invited to the conversation we had someone here who was on hold and maybe I made them wait too long my apologies but anybody who wants to jump into the conversation can do it here in Champaign Urbana 3 3 3 9 4 5 5. Toll free 800 to 2 2 9 4 5 5. There isn't a major focus in the book a major area of interest is on race. And I'm interested that it seems that what we now have learned doesn't hasn't had much of an. Impact on the popular imagination the way that we think about race. It was not all that long ago when European scientists were looking at the world and they were dividing it up according to people's appearance their surface appearance and their place of origin and they were saying well there were these different races they were attributing different characteristics to them

and they were saying well this really these these groups of people are all fundamentally different. Now what genetic science has taught us is that essentially the differences between people of different races are so small as to be negligent and negligible and yet somehow that we haven't quite caught on to you know that hasn't quite grab people the idea Oh well OK yeah we look different on the surface but we're not there. It's one it is one race. Yeah and if it's it's more than just the people. It's like there's this commonsensical notion that we have learned to see race so we see it and then we say well that's obvious. And we see the consequences of racing to go back into mortality there is no question at all that the United States there is a correlation between skin color and the chance of the baby dying. It doesn't mean that that melanin causes infant death but race is a response to the response to the color of the mother racism response to the care she

gets racism constructs a higher cluster of social economic political historical events that lead to higher infant mortality in the population. So just because you know race doesn't exist as a biological category doesn't mean that race doesn't exist social or characteristic. And it's hard it's really hard to move back and forth between the notion that race doesn't exist and the image that you have of me and I have of you in our callers have people listening in have that that we sound white black Hispanic Italian whatever. What we've done in the United States say Well Italian certainly not a race Jewish isn't a race to be a race now. Irish isn't a race to be a race now. So there's really no such thing as race when you're talking about white ethnic races. But the Americans have a really hard time letting go of the black white yellow thing.

And in Genesis and Mark's point yeah it's because we were sitting there in this physical place at the center of free trade routes and you have people who are black white yellow arriving and they looked real different from each other. If you wander through the world and you see these sort of infinite variation and then the lack of space in between. OK it's not that there's all these black people and then there's all these white people there's all these yellow people but the people come in all different shades of skin for one thing I'm a total absolute continuum. And there's no demarcation point that would say this is a race that's that race. America sitting in a place where people came from three different points on the continuum say well but basically we still exist. So it's really hard for the scientists to breakthrough that that the wind in our head they can tell us that race doesn't exist. It's really hard to get people to believe that.

We talked a bit earlier about the way that we're talking about and thinking about genes and disease and that we seemed. That is the way that in popular media this discussion goes that we perhaps have encouraged in people's minds this idea there is a one to one correspondence between a gene and a disease and all we have to do if we figure out what genes are responsible for what disease then. Well then we go from there and hopefully we can figure out some way to fix that before that disease makes itself known. And of course it's not as simple as working that way at all. And. Who knows whether it ever will. But what are the implications you think of us getting into. Thinking about disease that way. What we're learning of those implications right now. We are thinking of genes more and more in terms of disease causing entities that this gene causes that disease. And so you would then work backwards and say if you've got a disease what's the gene that

caused it. The media definitely has played part. I recall listening to an NPR story that said that they had found a gene that was involved with 10 percent of one kind of colon cancer. And that kind of colon cancer was 10 percent of all colon cancers. So you know quick 10 percent or 10 percent is one percent of all the colon cancers had a relationship with this one particular chain. And I was in the car with the friend he's not as into things. And I just did a little unfair that say what they say. And she said I think they found the gene for colon cancer. And that was the gist of the story you know they well they didn't quite find it but they pretty much found it. Ninety nine percent of the colon cancers don't seem to have the gene for involved and that something else is going on. But we are putting our money into the genes you know that that's and that's going. Be the big profit making sector to it

that there's profit to be made there. Talk about environmental causes. Talk about dietary changes. Talk about changing the social world. Mm hmm. It's not necessarily a profitable so there's not necessarily such a push to do that. And that's the consequence that we're living with and people are walking around with the notion now that breast cancer is a genetic disease. All of this talk of what they call Brock a 1 and 2 b are for breast cancer 1 and 2 there being two genes that have been found that are implicated in those that percentage of breast cancer is caused by those genes are like 5 percent of all breast cancers. These will have the genes that something like a 50 percent lifetime risk of getting breast cancer. So half the people with the gene don't get the gene 95 percent don't get the disease. Ninety five percent of the people with the disease don't have the gene. And yet when I talk to people they say well nobody in my family has breast cancer so I don't have the gene for it or my you know and

cancer therefore I'm probably going to get it. They've really somehow taken in bizarre genetic determinist understanding of breast cancer which nobody in the breast cancer science or all would ever claim. We have some other callers let's continue to talk with people who are listening in Urbana. One fellow. Yeah. Interesting discussion. Call up and ask. Since you think genetics are genetics whether or not we proceed. You know I kind of boldly in that area are not. Kind of depends on the philosophical questions almost like what are we about. And all that. What's life about. I was just kind of curious as to whether you'd come to maybe a personal conclusion

or alternatively if you through a particular point of view that you think is particularly attractive or admirable in terms of finding a set of law of facts or beliefs or whatever that would help us make the choice as to whether we should you know go ahead and change our what we actually are. You know the first time and I started working on anything to do with Chantix in the letter on the prenatal testing and Shanna book it had a lot of us. And instead of looking at you know what would you test for what are you looking for and what is it you're trying to create. Are you creating a baby. And I came to that. The point I was making to the earlier caller about have to know what it's for. You know perfect perfect watchdog or whatever it is I want it for but what do you want to be before me what's its point in being and I really have to know the meaning of life. To be able to answer the question and I actually don't know the

meaning of life and I actually haven't resolved it well in my own life. Why are we here. It's not altogether clear to me what is clear to me is that we're not saying we're going to have to wait and hauled off and deal with the philosophical issues and then do this. What we're doing is a very market driven approach to this. I wasn't a pal. That conference connected to the UN the World peace conference that it was called A while back and there were a bunch of people on this arguing about how we have to have international patenting of genes or they wasn't going to be any research to your cancer because if there wasn't any profit to be made then nobody would invest in curing cancer. And I was just sitting there. I lost my father to cancer and he was very very very. I've lost a lot of people I love cancer over the years. I'm a cancer for because if you ever met. And the idea that if there wasn't profit to be made it wasn't an

incentive to cure cancer just stuck in my throat. And if that's not a way to organize the world. If we have organized our lives in such a way that profit is the reason people see things and there's no profit we're not going to do it and I don't think we care to touch the human genome that's here for me to test. So I don't know how we should be thinking about this. But your point that we need to understand what we want out of life what life should be for what it's about for reaching to the genome you point well taken. It's not what's happening right now. It's fine if you find a gene for baldness could you find a way of changing the action of the genes that you make money at that. And the search is on. And yeah I don't think it is a question that the market's cruel a blind way of calling about making these choices but it just seems that it's kind of it's kind of you know

if you're going to if you if you say that you first that the quote meaning the law unquote then and then you say that you know well that's an imam centrally and answerable question. We're going to find some other way to make sure we do we do have to find some other way and it's got to be somewhere between hanging on until all is revealed or something and we understand the meaning of life and figuring out what the profit motive is. When you talk to ordinary people they generally a pretty clear about that it probably is not worth investing the kind of money where investing and taking the kinds of risks that were taking tank you know tempering around with the genes tinkering with the human genome over say baldness and that even if there is a lot of profit to be made don't go there. People are pretty clear you've got diseases that cause early and horrible death. Yeah let's let's let's think

hard about how best to get rid of that and if genes are one of the ways of getting rid of that fine. There are other ways of getting rid of that are probably less dangerous. That's even better. I think people are pretty clear about this but we haven't organized ourselves around the value of organized itself around the market. Well just one parting shot here and that's that to my mind were you were where they are which I think you're I'm personally don't you know I have to rely on very often I find. But I would think that there's only place where faith has a place and that is to me it's when you run out of facts and what's normal seems to mean you're the whole question of something that bumps up against that thing. Thank you. We have about 10 minutes left little bit less in this part of focus. Our guest Barbara Katz Rothman is professor of sociology at the City University of New York and has written

about these issues in her book which is titled The Book of Life a personal ethical guide to race normality and the implications of the Human Genome Project published by the Beacon Press. We have some other folks here will take as many as we can in the time that remains 3 3 3 9 4 5 5 is the number in Champaign-Urbana if you want to call toll free 800 to 2 2 9 4 5 5. Another Herb Bana color this is lie number two. Hello. Yes I'm the subject of funding for research whether it's profit driven or derived from other sources. It seems to me that the profit motive is really very curious to the validity of research. The thinking of a new person worked for years where it's all good. That's to boil for good animal fats were bad use margarine don't use butter. It turns out they're really bad and the reason we got that research was almost entirely paid for by the vegetable

oil industry. And it seems to me that if we fund our genetic research the same way we're going to get the same kind. A lot of people think that yeah and that profit driven research is a kind of a scary thing. And on and the the settle into place between what's publicly funded and what the privately patented afterwards has also been pretty scary. So a lot of people have participated as volunteers in generic research you know giving their blood there participating as they can and then turned around discover the whole thing then if you want to you know use a test say the results from that. They have to pay the holders of the patent. And so yeah implications of what the research will show it will show that what Holder wants to show

and who then has access to whatever benefits there are are both really morally tricky questions. Q Thank you. Take another caller this is in Peoria. Lie number four. Hello. Yes good morning. Yesterday you were radio they said about a lady that gave birth to twins. They were both of them. Then once later they're twins again and we were all so touched that it would cause that to means. I have no idea that anybody else has even. I don't know it doesn't seem from our understanding of how that kind of development works. It seems to be a remarkably lucky woman but not not a gene for attached head. It's hard to. Know what we know about how genes work it's hard to picture that kind of developmental thing is

genetically foretell. Three other questions again are welcome. Three three three W while all toll free 800 to two to a while back just for a moment to the subject of patenting genes. It's something that I guess I can still create quite wrap my mind around it at least in this. Because we know we do know that people have done it and it's the case for example if if I was a genetic researcher and I went out there and I discovered the gene that caused all Simers disease then I could say well this gene is mine. And anybody who wants to do work on this and one would hope that people would as a way of understanding and perhaps treating all Simers disease anybody who did that would have to pay me money and I guess if there's anything where you could make the argument that something is the property and the heritage of all humankind it's the human genome. How how did we get to the point where we said it was it was acceptable. The very notion that someone could patent a gel that's good I mean you

know the U.S. system the patenting. There's been disagreement many of the countries are not going off so fast as the same genetic testing the breast cancer gene test or whatever. Much less in other places where you don't have to pay a royalty because they don't buy the idea of patenting. This has been a decision we've made here and you know it is funny it's like I was writing all about the stuff I did an article for a magazine called The Breast Cancer magazine for breast camp. Community and I did this article on patenting and stuff and I mean I understand this intellectually just fine I did this article the recovered and the cover art they chose to use this patent. And I was holding in my hand this is a patent form they had patent number five million seven hundred forty seven two hundred eighty two issued to inventor Mark age Skolnick assigned to Myriad Genetics the University of use are you to research foundation for the breast cancer gene and

the just physically holding this thing in my hand it was nuts. I mean it is bizarre and nuts to think that you could do that. We got there you know sort of one logical step at a time. But it's a fundamental shift in our understanding of science. We used to think the world existed and scientists discovered that which was their patenting. Does he have to have invented it. And so your name gets written not as the discoverer but the inventor. And there really is a lot on the platform that says inventor and there is the name of the person who quote invented the breast cancer gene. He obviously didn't invent it. And yet to get. Prophet that kind of game we have to play we have to reconstruct by science. There's a famous line that always comes up when people have a conversation somebody it's just it's Jonas Salk that he had polio vaccine which he would have made in a very wealthy man and he said Oh you might help

the son at this point somebody trying to patent the sun. It. Sounds like a pretty good idea to me and I'll get on that later. We have time for at least one more call or maybe more let's go to Chicago here line four. Let's mentioning Jonas Salk as a point in his life when you decided to turn away from the microscope and look through the telescope and the light in a larger sense rather than on the infinite small defense that the microscope revealed. And similarly with the genome project ultimately you get around to the question you asked me before about the meaning of life and that would be freedom and relationships and other things that make it meaningful. So to the extent that yesterday dream becomes the hope of today and the reality of tomorrow we're on the verge of discovering things that will certainly put ourselves into a greater relationship and freedom or of merely put our selves in the hands of masters of our destiny so that then the whole we're going to deal with those things. I like your program I look forward to getting your

books. Oh thank you. Yeah I mean because they are always trying to figure out what's it about what's the point what's the meaning of life you look up at the sky. If you look inside the cells you look at rocks and you look at what you look at trying to figure out what is in some larger sense the meaning of all of this. And then we are pretty much turned back to where this college is that is we're the meaning the fall in our relationships with each other and the way that we treat each other. And to some extent when we look at a new technology one of the questions that we have to ask is. Are we trust worthy we in a good enough world where we will do right with that technology and we're getting some very very very powerful technologies. Well you're talking about you know technology is nuclear weapons are you to tell you that the technologies of genetics the micro kinds of technologies we've got some very powerful technologies do we have a good enough world in which we can trust ourselves of those technologies.

And again the one of the notions is well we just make better people will get a better world. And the other is that if we don't change what we value in the world we're not going to get a better world. There is a good place for us to stop which we must do anyway because we are at the end of our time. To mention again the book if you're interested in looking at it it's titled The Book of Life and by our guest Barbara Katz Rothman. She is a professor of sociology at the City University of New York a professor ROTHMAN Thank you very much for being us.