Home > Focus > Genetic Testing and its Implications: an interview with Dr. Arthur Caplan

Genetic Testing and its Implications: an interview with Dr. Arthur Caplan

by Jeff Ubois [1] , 25 November 2006

Currently, Dr. Caplan is the Emmanuel and Robert Hart Professor of , Chair of the Department of Medical Ethics and the Director of the Center for Bioethics at the University of Pennsylvania in . Born in , Caplan did his undergraduate work at , and did his graduate work at where he received a Ph.D in the history and philosophy of in 1979. Caplan is the author or editor of twenty-five books and over 500 papers in refereed journals of , science, philosophy, bioethics and health policy.

He has served on a number of national and international committees including as the Chair National Cancer Institute Biobanking Ethics Working Group, the Chair of the Advisory Committee to the on Human Cloning, the Chair of the Advisory Committee to the Department of Health and Human Services on Blood Safety and Availability, a member of the Presidential Advisory Committee on Gulf War Illnesses, the special advisory committee to the International Olympic Committee on genetics and gene therapy, the ethics committee of the American Society of Gene Therapy, and the special advisory panel to the National Institutes of Mental Health on human experimentation on vulnerable subjects. He has consulted with many corporations, not for profit organizations and consumer organizations. He is a member of the board of directors of The Keystone Center, Tengion, the National Center for Policy Research on Women and Families, Octagon, Iron Disorders Foundation and the National Disease Research Interchange.

He writes a regular column on bioethics for MSNBC.com. He is a frequent guest and commentator on National Public Radio, CNN, MSNBC, the New York Times, Washington Post, Philadelphia Inquirer and many other media outlets.

Caplan is also the recipient of many awards and honors including the McGovern Medal of the American Medical Writers Association, Person of the Year-2001 from USA Today, one of the fifty most influential people in American health care by Modern Health Care magazine, one of the ten most influential people in America in biotechnology by the National Journal and one of the ten most influential people in the ethics of biotechnology over the past ten years by the editors of the journal Nature Biotechnology. He holds seven honorary degrees from colleges and medical schools. He is a fellow of , the NY Academy of Medicine, the College of Physicians of Philadelphia and the American Association for the Advancement of Science.

Jeff Ubois: The high-level issue that I wanted to talk about was what we're calling responsibility in innovation. If you make innovations like prenatal sex selection the results is that the gender balance in a country changes dramatically, that affects the politics of the place. So, I'm looking for bridges between the world of politics and innovation, how to bridge those two cultures. And it seemed like you've managed to land kind of right in the middle there, at least on a number of occasions. What's sustainable innovation? What tools can people use to look at likely effects or to manage it, what kinds of innovation should or should not be funded? And so on. So, could we start maybe with the specific issue of prenatal sex selection? I know you've done a lot of ...

So could we start with the issue of prenatal sex selection and the ethics around that and how you would frame the problem, what kinds of screening is appropriate or inappropriate, what kinds of screening should, shouldn't, mustn't be done for physicians to be ethical as practitioners for parents to be ethical as parents?

Art Caplan: First, with genetic screening, you have to divide it in a couple of ways.

We usually refer to screening as something you do to adults. And you could be screening adults for diseases that they might want to know about because they're going to make certain reproductive decisions. So, we know that we can test people, for example, for Tay-Sachs disease or Sickle Cell disease or Thalassemia and find out whether they are at risk of passing those diseases along to their offspring with higher probability.

You can even do it before people marry and see whether they're going to have children if they did get married, that would have diseases. And you could either urge them not to get married or urge them not to have children, urge them to think about adoption. So, the issues of reproductive choice around genetic screening are complicated.

For example, on the Island of Cypress on it's hard to get married by the Greek Orthodox Church unless you undergo a genetic test for Thalassemia.

Jeff Ubois: What has been the effect on marriage, society and public health?

Art Caplan: They've reduced the incidence of Thalassemia, which is like a Sickle Cell type disease, significantly. I don't think that people find it intrusive, but you can get married outside the church. You know, it's not the only way to get married. There has been a spread of the program without the same marriage connection, but with more encouragement to get testing of people into the rest of Greece and into parts of Italy.

Jeff Ubois: Who drove that choice inside the Greek Orthodox Church?

Art Caplan: That's a great question and I don't know the answer. I don't know how the church engaged the issue, but I do know this: The church, for many years, was responsible for health care. They were underwriting the costs. And the costs of treating kids with Thalassemia, blood transfusions and so on, was just overwhelming them.

Jeff Ubois: So, it was an economic driver, but there were a variety of screens and tests that can be done prior to marriage, prior to birth.

Art Caplan: For that type of genetic screening, you basically want to say, "Well, how is that done responsibly and who should do it?" So, part of the principles you look to there are you don't want people forced or coerced into having to undergo genetic screening. One principle that seems important is that you don't have a competent adult coerced, forced into genetic testing that they don't want, that it should be up to them to decide whether or not they want to know information about their genes.

Jeff Ubois: OK.

Art Caplan: And partly because there are many ways in which they could be penalized. If they are found to be at risk of having a disease, they could lose health insurance, disability, maybe even employment in some parts of the world and you know, it's one of those situations where you have to make a trade-off or make a decision.

Jeff Ubois: One might argue that someone else's kids will affect society for the rest of their lives.

Art Caplan: Yes, but since we basically, allow reproductive freedom in having kids, we don't stop people who know they have genetic diseases from having kids. We don't stop that, so to speak. The only place that seems to have put in a policy to discourage that was actually Singapore, which was trying to give incentives to smart people to have more kids.

Jeff Ubois: Right, I want to talk about enhancement, in fact. Art Caplan: In general, if you accept the idea that reproductive freedom not being interfered with is a basic right, then it's hard to restrict on the basis of the risk that you might create children with burdens or costs. So that leads to the idea that genetic testing ought to be voluntary. And you don't want to have screening without counseling because a lot of these issues are complicated and it's hard for patients and their doctors to understand probabilities associated with many of these diseases.

Rarely will there be a certainty that a couple is going to have a baby with a genetic disease. You may have an increased probability for some of them. Like hemophilia, women are carriers, but men have the disease and that has to be carefully explained. Some genetic diseases like breast cancer, if you find out you carry the gene, it does put your child at risk, but it may be a disease that's not going to appear for 50 years. So, you may say well, in 50 years, maybe we'll cure breast cancer, so I need not worry about that too much. So, there are all sorts of issues that require thoughtful counseling.

Jeff Ubois: Are there any screens that you think, beyond coercive screens, that should never be done or that shouldn't be done?

Art Caplan: Um, I think that there are some people out there, offering tests on the Web, that either aren't accurate or aren't proven to be reliable tests. Let me give you a simple example. If you look on the web, there are people saying, "Get this genetic test and we'll design a diet that meets your health needs."

Well, I think that's a lot of nonsense. I think that they don't know how to do that and those tests aren't real, but they charge you a lot of money.

There are other people who say, "Let me test you and I'll tell you who your ancestors are." But again, that's a questionable area, in terms of really being able to make sensible statements such as Columbus or Henry the VIII was your relative.

There is a lot of genetic testing that is over-hyped. So yes, there are some tests I would restrict at least for now.

Jeff Ubois: So basically, the commercially driven. Those are examples where commercial drives are driving inappropriate tests.

Art Caplan: We don't have good standards to put in place for saying a test needs to get to this level of accuracy and this level of reliability before we would allow it to be made available. Right now, the market drives most of this stuff. So, ancestry testing, special diets, all this sort of know yourself kind of genetic testing, I'm pretty skeptical about it.

Jeff Ubois: And are there any tests that at this point, responsible parents to be should not fail to take? I'm just trying to bound the space a bit.

Jeff Ubois: Even the burden of certain fatal diseases for kids and the suffering involved, I think Tay-Sachs testing, if you're in an at risk group would be very important to undergo if you're in an Ashkenazi Jewish population or married to someone of that background I think it makes sense to undergo testing for these blood disorder genetic tests like Thalessemia and Sickle Cell. And there's another one, what is it? Cooley's Anemia. These are very dangerous, lethal diseases. There's a disease called Fanconi's Anemia that really is also exceedingly life-shortening which if it is in your family you would want to get yourself or your offspring test for.

So, yeah, there are some that basically, disable the child severely or cause very, very early death of the child. I'm not saying you shouldn't have such children. I wouldn't stop people from saying, "You know, we'll take our chances. Maybe our child won't get this." But, you should go in eyes open, is what I would argue. And it's information that I think you need to have if you're going to reproduce responsibly.

Jeff Ubois: And how do you see these tests playing out in different cultures?

Art Caplan: Well, certainly, one of the ways in which they do is they sort of set our understanding of what counts as a severe disability. You might be able to test carriers for deafness. And in some communities, deafness is seen as a difference, not a disease. You might be able to detect some forms of hereditary blindness. Same issue.

So, I think our understanding of who is ill, what constitutes severe disability is very much culturally driven, not always in ways we might suspect. Poor countries may be more accepting of disability as part of the way things are than a rich country where you say, "Well, you could prevent it and we aspire to more perfection in our children," and that sort of thing.

So, it doesn't necessarily sort out the way people would think that maybe the more developed world is more sophisticated about it and more accepting. Not always. Not far from where I live, the Amish people, are a community that is very accepting of disability and difference and no disability would stop them from having a child. They see all children as gifts from God and they're not put off or not willing to intervene in the same way in what they see as the natural order of things. Jeff Ubois: This kind of issue of neurological diversity is one way I've heard it framed around Asperger's and testing for Asperger's.

Art Caplan: I wrote a piece not so long ago called, "Would you have allowed Bill Gates to be born?" (see http://www.msnbc.msn.com/id/7899821/) And you know, the issue of what to do about new tests for neurological differences is already with us.

Jeff Ubois: You left open the question, actually.

Art Caplan: Yeah, well for me, I wouldn't... it's not clearly impairing or disabling to have certain forms of Asperger's or to be socially backward. It may not be fun, but it's not necessarily ... there are plenty of people and I was using Gates as a possible example, who do just fine or better than just fine.

So, I want to be open to difference. But, at the same time, I understand if somebody says, "I have this risk of creating a child who's going to die at two. And nothing can stop it and there's going to be a tremendous amount of suffering." I'd rather use in vitro fertilization or adopt or maybe just not have a child. I understand that.

Jeff Ubois: And what about gender selection?

Art Caplan: So, that moves us over into a slightly different realm, which is testing a fetus, prenatal testing. So there, we have a different situation. Now, we're not talking about deciding not to have a child or deciding whether you're going to use a donor. Now, we've got either embryos or fetuses and something's going to be done to those entities, depending on the answer to the genetic test.

Historically, this has been an area where doctors and counselors have been unwilling to tell people what they think they ought to do because it's very intimately connected with abortion and with reproductive choice. Medicine doesn't like to say much normative about those areas. And here's what I mean. If you go to the doctor and you're smoking, the doctor says, "Stop smoking."

If you go to the doctor and your genetic test of your fetus shows that your child has got a terrible neurological disorder like Spina Bifida, the doctor doesn't say, "Don't have the baby." The doctor just says, "Here's what Spina Bifida is, this is the range of possible severity in the condition, this is where we could be. You decide."

So, in some areas, medicine is very directive, "Stop smoking; stop drinking. Lose weight, your cholesterol's too high, your blood pressure's too high, lower it." They don't say, "Well, Art, you decide." You know? "Your blood pressure's very high and you should decide if you want us to treat it." They say, "We're treating it, this is what must be done."

Jeff Ubois: There's a lot less directive advice with respect to reproduction and screening.

Art Caplan: We never see that in reproductive areas. It's partly even due to history. The whole field of human genetic testing came out of the wake of the Nazi experience with eugenics and as it began to grow after WWII, people were very nervous about telling other people what they ought to do. It also evolved at a time when value-free psychoanalytic approaches were all the rage in counseling, and so, there was more of a value neutral stance. You are to listen to people, but you're not to direct them.

Jeff Ubois: That's really interesting.

Art Caplan: I've written about this in a numbert of papers. A set of historical circumstances has deeply shaped the way in which medicine deals with genetic tests, prenatal tests.

Jeff Ubois: You don't want to cross the Freudian church.

Art Caplan: Correct. And you don't want to break ranks with the Freudians, exactly. So, there's a lot in play.

And I'll tell you where this is headed. So, if I say, "I'm here to get a test for boy or girl," you might expect doctors to say, "Well, that's not a disease and we don't do that." But, in fact, because they're so used to being value neutral about reproduction, some say, "Well, OK, we'll do the test and it's your choice." My answer to you is I wouldn't do testing, genetic testing for gender unless it was linked up to a disease, which some diseases are. But, I certainly would try to counsel people to say, "No, you shouldn't try to avoid boys or girls. It doesn't matter. That's sexist." The problem, by the way, is not genetic testing, it's sexism. If the outcome of genetic testing for gender was a fifty fifty split there would not be as much concern about genetic testing for gender. So it is sexism we fear as much as gender selection...

Now, if somebody says, on the other hand, "Well, we have four boys and we'd like a girl," if there is a way by sorting their sperm or doing some other trick to let them have a little gender balance, I don't think that's immoral at all. I think that's other things being equal. That's what they're trying to do.

Jeff Ubois: And I suppose people are thinking who are in a society where their economic future is heavily dependent on the gender of their kids. Art Caplan: Yes, as societies develop economically gender is less important, that's more of an agrarian problem and a Social Security problem. In China or India, you want more boys because they're the earners. Girls -- you've got to provide dowries. There's a whole culture in which girls are seen as less desirable because they are economically problematic.

Jeff Ubois: But, that is a reality that impinges on the individual making that choice.

Art Caplan: Oh, 100 percent and so, there's been a skew away from girls. In India and China, we know about infanticide. We know that there's genetic testing using amniocentesis to get rid of girls, so there's absolutely sexism. So, part of the problem is to get at the sexism.

Jeff Ubois: And do you think that prenatal testing is a way of, in a sense, making infanticide more polite?

Art Caplan: Yes, absolutely. In fact, I'll go further. Prenatal testing [may allow] an abortion in utero early, which is morally preferable to killing a live born infant. And some people would say, "But, wait a minute, isn't a fetus a baby... aren't you denying that a fetus is the equivalent of a baby?" And I would say, "I don't think the fetus is, at least early on in pregnancy, the moral equivalent of a baby." The earlier you can end a pregnancy, if that's what you need to do, say do to rape or because the mother's health is in grave jeopardy, the better, because you feel morally less torn.

It's seen as a morally desirable thing to do to end pregnancies earlier, rather than later.

There are conditions, however, that you can only detect prenatally that you can't be sure about just by screening parents. And there are often parents who didn't get screened who show up with very very sick babies. So, there's certainly a role for prenatal testing. And remember, too, prenatal testing has one other twist: for certain conditions, you can treat them.

Jeff Ubois: Right.

Art Caplan: Prenatal testing has a very weird moral characteristic. It's the only area in medicine where there are mandatory tests, no exceptions. When you get born, we test the infant immediately for a range of genetic diseases to see whether they need a special diet to treat a condition such as PKU. And so, part of the issue about testing for genetic conditions in fetuses and babies is whether there is a possibility to step in and do something therapeutic. If we have more therapies, we will see more mandatory prenatal testing. And so, you know, we even have prenatal in utero surgery. We do it here at Penn. It's very expensive. It's not something that's going to be found too many places around the world. But, Children's Hospital here does it, oftentimes, it's triggered by a prenatal test.

That's what leads them to go and try and repair something or fix something or put a tube into the fetus itself to prevent hydrocephaly. That's what I'm talking about. We are going to see more testing as genetics expands and as therapies expand.

Jeff Ubois: You also get into that issue of what's disease and what's difference right there again.

Art Caplan: Correct. And so, there are parents who have prenatal testing who I know for a fact have been panicked by anything that looks abnormal or unusual. And they've decided to end pregnancies. I don't think that's morally right. They see an XYY baby. They are told that their fetus has got some kind of mosaicism, meaning it has male and female cells that are mixed up. I'm not sure that's all that disabling or troubling, but they don't like the sound of that and they end the pregnancy.

So, there may be places where more directive counseling ought to be utilized, in my view. Parents would still be free to decide. But, you need more aggressiveness on the part of the counselors, just like we see with smoking and blood pressure and so on so they don't act out of panic, bias against disability or just ignorance.

Jeff Ubois: So, what do you say to people that are developing tests? Are there tests that shouldn't be developed ... ?

Art Caplan: Well, given the way the genome has been mapped, it's almost impossible to hold back genetic tests. You're going to kind of blunder into them because you're going to find correlations between conditions in adults and genetic markers. And then, you'll know that you could use them on embryos or fetuses, too.

So, there's not much you're going to be able to do about that. You're going to have to decide whether you want to pay for the test, whether doctors are willing to give the test. That is more realistic than just saying, "Don't invent the test."

Jeff Ubois: So the interventions that might be made are not so much the early part of the innovation cycle there - it's the later part and the application of innovation.

Art Caplan: Yes, and it's a trickle down from adult to babies and fetuses to embryos, and that's not so uncommon a pattern of innovation. You get a machine, you use it on an adult. Then, you think all right, maybe I could use it on a teenager, use it on a young person. Maybe if I change the size of the tube or the amount of time on the thing, I can try it on an infant. Maybe I can even use it prenatally. There is significant technological innovation that goes that way. It trickles down from adulthood down to little kids.

Jeff Ubois: Can we switch over for a few moments to talk about the effect on society and political discourse? I know you've been deeply involved in that and I think there is almost a hope among certain political types that these decisions or these questions can be delegated to experts who serve as honest brokers and take on the moral responsibility. So, I'd like to get at some of the tensions there about how do you go about advising the political world …

Art Caplan: Yeah, there's trouble here advising the political world. Uh, first of all, most politicians don't know where their genes are.

Jeff Ubois: Specialized knowledge is missing.

Art Caplan: Correct. So, they don't know much. So, telling them there's this test or there's this gene therapy or this counseling question that comes up or you should pay for counseling, as well as testing, they're often befuddled, at best. So, that's a problem. I do a lot of work these days in bio banking, which is accumulating tissues and genes, in order to look for markers that can be made into genetic tests. And what you need to do, oftentimes, is have a hearing where politicians just are educated. So, the first step is not to regulate or do much of anything or even propose a law. I would submit, oftentimes, the first step is just to have a hearing and let experts come and try to teach people a little about what the issues and the options are.

Cristina Grasseni: This is a very interesting and controversial point: so the experts should try and educate those (the politicians) who then go on and make decisions about which rules of conduct the experts should follow…

Art Caplan: Yes, that is exactly how I see it!!

The media plans a key role in this, too, and doing features and magazine pieces and specials that sort of outline some of the ways in which it is going is very helpful because as you can probably imagine, politicians pay close attention to the mediaâ€"it is how they stay in office.

Jeff Ubois: Well, so, if you're dealing with something that's really important, how much can you simplify it and how much is it appropriate to dramatize it? Should stem cell research be governed by a debate between people in wheelchairs and abortion rights activists? Art Caplan: No, but politically, you have to live with politics and anything in the U.S. that touches on abortion is going to be politicized and fought out at the highest levels of rhetoric. That's just the way it is and you're not going to change that. So, anything that anti-abortionists can do to stop what they see as murder, they're going to do because the moral stakes are so high. And the proponents who say, "I have to find somebody to help my child or I'm not going to stay in this wheelchair forever," they'll do what they can to fight back.

So, in some situations, you're just going to get past overheated rhetoric. And what you try to do is put out articles, put out comments, put out pieces that acknowledge that and then, try to lay the issues and options out. But, stem cell research, for example, is pure politics at this point. It isn't connected to the issues, anymore. It's who can muster up the most lobbying power, the patient groups or the pro-life groups. And right now, the patient groups, I'd say, are winning despite a recent set- back in this country. The funding of embryonic stem cell research is proceeding in many states and with private money as well.

Jeff Ubois: The patient groups are winning?

Art Caplan: They're slowly swinging Congress in the U.S. There's many states that have decided to allow stem cell research going against the Bush policy to discourage it. There are leading prominent Republicans breaking with the President.

Jeff Ubois: Is it reasonable to think in terms of local regulation of genetic research when there are lots of countries around the world with research programs?

Art Caplan: No. I think that countries need national policies that are debated and discussed in the open and so that the public can see what the arguments are for them. So, I do think it's important not to do what the U.S., Canada or Australia sometimes do, which is to have state-based or provincially-based policies.

Internationally, I think what you need to do is set up minimum guidelines. Countries should be free to exceed those regulations. So if somebody says, "In Poland, we're not doing stem cell research, that's it," OK, but if we are going to do it, then there ought to be agreed upon minimal international standards.

This area of bio banking that I mentioned earlier is an example. We need international harmonization in the bio banking rules, informed consent, how long scientists may keep stored tissues, who controls them, whether scientists or companies can resell them. I'm looking to drive policy in that way so there's more standardization because these bio banks in which researchers, foundations and companies are collecting information, collecting tissues, or both from people so they can develop genetic tests to see if you're at risk of prostate cancer or depression or whatever disease it is, are going to require data and tissue from across national boundaries.

You know, if you really want to have an adequate bio bank, say in the U.S., you want to treat people who came here from Korea or came from Nicaragua, well, there aren't that many here, so you're going to need information from their home nations. So, this is a classic area that's crying out for international coordination. Whether we'll get it, I don't know ...

Jeff Ubois: So, it sounds like you're trying to ensure that innovation happens in sort of a responsible way or with some effort to think about implications or consequences.

Art Caplan: Proactively, too. Do it ahead of time. Don't wait for the crisis or the lawsuit. Do it proactively.

Jeff Ubois: And so, what kind of approaches can you make to that?

Art Caplan: Well, good bioethics, I think, first of all, it's good for programs like the one at Penn to be included inside a big medical school that does a lot of research. So, we're able to see where the science might be in a couple of years, so we're positioned to be an early warning system. So, that helps. Secondly, my view is it's important to have people trained in both the science and the ethics, so we have a very busy master's program here. We have over 130 students taking master's degrees at different levels. Some are doing it over five years; some are doing it over one year. They come from medicine and science, dentistry and nursing and veterinary medicine and the law.

At Penn we're trying to prepare people to be ready to watch for those issues and participate either as scientists trying to write about it or as doctors who get asked questions from their patients. Or hopefully, some of our people, well, many of our people have already gone to work for government staffing agencies, taken on jobs with international organizations like WHO and that sort of thing or the AMA here. So, we're trying to prepare ... and going in industry, too, I should add.

Jeff Ubois: So, you're basically, building this giant alumni network across a whole bunch of different disciplines...

Art Caplan: Correct. So, we are subtly, quietly trying to set up a kind of cadre of people who can wrestle with these issues. They don't all agree with each other, but they are alert to where there might be problems. We have, you know, people from many backgrounds as our graduates... we've had a couple of nuns and priests come out of our program. We've had libertarians. We have had conservatives and we have had liberals. We have the whole spectrum of values orientations, but we think that a better informed group of ... I don't want to call them experts because that would be too strong, but a well informed group of professional people working in all sectors is critical to having better ethical discussion nationally and internationally.

Jeff Ubois: Are there other research centers or agencies that are doing similar work like this? Do they have ...

Art Caplan: There are some other programs in the United States. No one is as big as the Penn program, in terms of training, but there are strong masters programs at Virginia, Georgetown, Pittsburgh, Case Western, for example. In Europe, there's a very good program at the University of Crete. There is a program at the University of Oslo, Cardiff in Wales has one. There's a new bio ethics program in Pakistan at Karachi. There's some very good ones in Australia, Canada, the Netherlands, Spain and Portugal.

Jeff Ubois: Do they have some common cultural policies?

Art Caplan: Um, we talk to one another. I don't know if we could go so far as to use the word, "common," but at least acquainted with, how's that? We have to reckon with, what different views are. So, if somebody says from the point of view of the ethics program in Brazil, we've got to move on doing research on AIDS and we're not going to use the same risk benefit kind of equation that might guide whether or not you can do an experiment in the United States, we all know what that means.

Jeff Ubois: Are there ways you measure, you know, the innovator's responsible as an individual vs. the responsibility of the larger institution or are there some good dividing lines there?

Art Caplan: I think the innovator has to be someone who signals potential issues and problems, should be sophisticated enough to think about them. We don't expect the innovator to solve the social challenges that a new technology would raise, but we do expect them to alert people. I'm never happier than when one of our veterinary scientists comes over and says, "You know, I'm doing this project on animals and we think we can do such and such with the animal, and obviously, if it was done with people, it would raise a big issue, so you guys should start thinking about that." That's great when that happens, and that's the kind of scientist you want.

Jeff Ubois: So, it's crossing disciplines is a big part of this.

Art Caplan: Huge, absolutely huge. And that's what makes it hard because you're trying to talk across fields that normally don't talk to one other or don't understand one another. So, the philosophers and the veterinarians and the law professors and a couple of social scientists in the same room, it's sometimes, kind of like having, you know, people from Mongolia having a conversation with those from South San Francisco. It doesn't, necessarily, go smoothly, initially.

Jeff Ubois: So, one is to what extent do you think, since the effects of innovation transcend the inventors' will, do they also transcend his or her responsibility in some way?

Art Caplan: Yes, I think they do. I think the inventor or the innovator is not always in a position to understand every which way that a technology might go. They just don't get it, necessarily, and nobody really can forecast 100 percent accurately. But, all that being said, I think that the innovator has to think about some basic ethical questions. I'll give you a concrete example. If I'm making artificial viruses like a virus or smallpox, do I publish everything about how to make this deadly bugs in the journals?

Jeff Ubois: Right.

Art Caplan: Where everybody could see it? I've argued that you have responsibility not to do that. Giving dangerous and deadly information out in places in libraries or on-line where any nut or terrorist could find it seems to me to be irresponsible on the part of the scientists. But the culture of science says that you publish everything. So it will take some arguing to see that kind of restriction put into practice.

Jeff Ubois: Last question: what are your thoughts about neurological enhancement? Is it technically a dream? If it isn't, what are the implications?

Art Caplan: It is no dream. it is distant but it is coming. You will someday be able to enhance yourself neurologically with improvement of emotionally stability, memory, repression of unwanted memories, improved speed of neurotransmission, and improved cognitive skills either through drugs, surgery or implants. This will raise three key ethical questions--is it fair if only some can do this or only some choose to do this; is it meddling with human nature to modify our brains in a dangerous way and how much change can be done before your personal identity is compromised?

Jeff Ubois: Thank you very much.

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