cc  (applause)  >> Her background, experiences  and credentials are  more extensive than I have time  to share you with this evening,  but that said I'd like to be  sharing a few things with you.  She's a world renowned educator  and academic, a lawyer, a  researcher and advocate, an  author and, more specifically,  an author, expert and researcher  in the areas of bioethics, food  and drug law, health law, law  and medicine, law and science,  legislative drafting,  reproductive rights law and  torts.  She's a member of the many  national and international  organizational boards wrestling  with these critically important  issues.  She's not only an educator and  academic here at UW Madison,  she's has also served at many  other distinguished institutions  of higher education in the US  and abroad.  She's an advocate who has been  called upon to give expert  testimony and earlier this month  she was invited to participate  in a round table discussion on  women's health at the White  House.  I could go on but I know you  don't want me to.  (laughter)  So join me in welcoming  Alta Charo.  (applause)  >> Alta Charo: Thank you.  First, I don't know what they've  been telling you, but whatever  they've been telling you to  cover for me is false, and it's  entirely my fault that you are  starting so late today and I  certainly want to apologize.  I really did not mean to be so  disrespectful of your time. 

 It was entirely due to my own  space cadet-edness.  So you can have your absent  minded professor stereotype kept  intact at least for another  night.  (laughter)  I'm really incredibly  lucky that Dr. Sussman was here  to talk with you about synthetic  biology.  It was just a lucky guess.  But the reason I suggested that  you be warmed up with that topic  is that it's a new topic that  raises old questions about the  public control, or lack of  control, over science.  So before we begin, both on  synthetic biology and on other  topics that raise these  questions ranging from cloning   to sociobiology, I wonder if  anybody here is ready to start a  list of those kinds of  experiments or those  circumstances under which they  think this particular field of  science should be absolutely  forbidden, it should be a  criminal act to engage in this  science.  Is there any kind of experiment  you could imagine should be  forbidden?  Please start us off.  >> Putting pieces of different  viruses together to create a  supervirus that would be  incredibly lethal and easily  contagious and impossible to be  certain it could be contained.  >> Alta Charo: Okay, so  the chicken heart that ate  New York scenario, right?  You're going to create the  supervirus and the world  scenario.  Any objection or are you all  comfortable with forbidding this  science?  Yes ma'am?  >> I'm actually a man. 

 >> Alta Charo: Sorry.  Excuse me, I'm also suffering  from a bad sty in my eye so  there's a blur out there, but  it's an orange shirt, right?  (laughter)  Good.  Yes?  >> Shouldn't it be a scientist  who makes that first as opposed  to terrorists?  >> Alta Charo: Shouldn't it be a  scientist that makes if first?  It is a scientist who is  proposing to do it.  Should it be criminal for a  scientist to do it?  Should it be criminal for  Dr. Sussman to do it?  >> Shouldn't it be, if there's  someone who should do it,  shouldn't the first person who  made this be a scientist,  someone who would be studying it  as opposed to releasing it to  the public?  >> Alta Charo: Absolutely,  so let me be more precise  about the question.  A scientist wants to study,  right, the process of creating  new organisms, and specifically  wants to be looking at viruses,  wants to look at how to  construct viruses.  There are reasons why you might  want to do such a thing.  You might want to learn how to  construct them so you could  learn how to defend against  them.  You might want to learn how to  construct them in the course of  doing research on the creation  of vaccines that mimic viruses  but don't carry the same  lethality.  So the intention may be noble  but the question is should the  experiment be forbidden?  And Dr. Sussman has laid on the  table the first challenge which  is this is the one area where we  should throw him in jail if he  does the work in his laboratory.  Is there anybody who wants to  keep him out of jail or are we  going to throw him in there?  >> Can I ask a follow-up  question to that though?  How do you determine what is the  path to the supervirus?  >> Well, no one  knows if it's even possible  to make one. 

 So the first step would  be to see if one can make one.  >> But isn't that the process  that's going to get you thrown  in jail?  >> Alta Charo: And this is part  of the dilemma of trying to  criminalize so let's just step  back one step and ask why you'd  want to criminalize and then  look at some of the dilemmas  that arise when you try.  Why would you want to  criminalize this at all?  >> Why what?  >> Why would you want to  criminalize this experiment at  all?  What's the principle on which  you're deciding which things to  criminalize and which not?  >> You're endangering society.  >> Okay, so this is a classic  principle.  You're rights end at my nose so  where your actions are going to  hurt me now finally we've got  some social obligations or  social entitlement to control  your actions.  Harm to third parties, classic  principle.  So if this experiment puts other  people at risk then we can  control it.  We can regulate it or we might  even forbid it entirely if it's  unsafe to do under any  circumstances.  Okay, but here is one of the  dilemmas that's really core to  scientific research and you got  to it much faster than I was  hoping which is that often  science, because it's  incremental, is a series of  steps, none of which are really  definitively dangerous.  Each one of which is about  learning a little something and  as people begin to predict the  down stream applications of your  science and begin to predict all  of the ways in which it might be  harmful to society, there is an  interest in quickly forbidding  the science entirely. 

 Yeah?  >> By forbidding it, wouldn't it  be somewhat similar to  censorship?  >> Alta Charo: It would be very  similar to censorship  but here's a different scenario.  You're allowed to do the  research but you're not allowed  to publish it.  Are you more comfortable with  that or is that equally  uncomfortable?  Yeah?  >> What do you do about  serendipity?  >> Alta Charo: You can't do  anything about serendipity  except tell people to stop  once they've done something.  But let's focus for the moment  on those things that we can  actually try to predict because  when you write laws you try to  write them to describe a  circumstance that's foreseeable,  and then say this you may do and  this you may not.  Because you're quite correct,  there's going to be some things  that happen unexpectedly and we  can't control for them.  Would censorship be acceptable  where criminalization is not?  We do have censorship of  science, right?  You're going yeah, yeah.  In what context are you  thinking?  >> Stem cell research for one  thing, but things that have come  up.  >> Alta Charo: Well, you know,  stem cell research wasn't so  much censored as it was  under-funded, right?  >> It was going in the  censorship way.  >> Alta Charo: I'm thinking of  a classified research  where you're allowed  to do the work but you're not  allowed to disclose the results  except under very special  circumstances and to a very  small group of people.  So we have a tradition in  science of making distinctions  between the science we think of  as having some purpose or some  potential that is of societal  import that let's us limit it  and those that don't. 

 But usually the principle really  is harm to third parties.  Whether it's an ecological risk  or it's a national security  risk, in every case it tends to  be harm to third parties.  And this is the one area where  at least there is some comfort  even if it's difficult to figure  out where to draw the line and  what it is your criminalizing.  Yeah?  >> Okay, but the thing about it  is if you're talking about  classifying research versus  research, not to be a pain in  the butt, but wouldn't that kind  of research naturally fall under  the classified military spectrum  versus someone just testing  virus resistance?  >> Alta Charo: Amazingly enough,  not necessarily.  You look like you want to say  something.  >> Is it right for, this  government wants to know if it's  possible to make a supervirus so  that we know if someone else is  going to do it.  Would you allow your government  to pursue that?  Would you want your government  to pursue that?  That's what I've been asking  myself.  >> Alta Charo: Yes?  Somebody said yes.  You do?  >> I do.  >> Alta Charo: And you want them  to pursue it because you want to  have what, defensive capability?  >> You need the ultimate  knowledge. 

 >> Alta Charo: You need  the ultimate knowledge.  Yeah?  >> What about the  analogy of the Manhattan  Project whereby the act of  actually going to create the  atomic bomb they created  technology that then spread  throughout the world very  quickly, and by making your own  bomb and making sure that other  countries that may or may not be  using it responsibly would not  have it.  >> Alta Charo: Of course we've  tried very hard  to censor information  about that haven't we?  We've tried very hard to keep  anybody outside of a very  limited circle from knowing all  the details of how you exactly  would put together such a bomb.  In fact, there's somebody here  in Wisconsin who's made a  20-year career out of trying to  get the precise blueprint  details for the bombs that were  dropped in Japan and has been  thwarted over the years,  although he's now recognized.  He's not a scientist, not an  academic, just a regular guy who  just became obsessed with this.  So we have tried to censor that  kind of information.  But you're quite right, this is  the 1940s analogy of the kind of  viral research we're talking  about.  And it may be worth knowing that  we do make these kinds of  distinctions, we have an  international treaty against  bio-warfare.  It prohibits the United States  and a number of other signatory  countries from developing, from  affirmatively developing  biological weapons.  But despite that the US has  long pursued an active area of  research in the area of  bio-weapons on the claim that  they were engaged in defense  research. 

 So Fort Detrick in Maryland is a  known site for a lot of work on  exactly this kind of thing  ranging from how you would work  with the viruses to the  mechanics of things like how  would you aerosolize something  so that you can disperse it  quickly.  It's not enough to be able to  have a pathogen in your pocket,  you've got to somehow get it out  there.  And so just aerosolizing  something can be very difficult.  And that came up in the anthrax  investigations.  The only reason I'm pursuing  this is because these are  examples where we've got a nice  clean issue of physical danger.  But now because of the comment  about the atomic bomb we've also  got this kind of second layer of  concern about whether or not you  are really setting yourself up  over the long run for something  which is dangerous over the long  run even if it's useful in the  short run.  That is this concern about the  slippery slope effect of  engaging in research.  Yes, sir?  >> When you mentioned the  treaties and laws against  biological warfare but we have  treaties in place against, we  have the Nuclear Proliferation  Act trying to keep nuclear  weapons out of terrorists' hands  and other countries' hands.  And like someone said earlier  maybe we create the atomic bomb  to see if it could be created  and then try to prevent it.  So if we try to create a  supervirus then wouldn't it be  likely that the same type of  thing would happen like the  nuclear atomic weapons where  eventually it would fall into  the wrong hands?  >> Alta Charo: That's exactly  the concern, that's exactly why. 

 >> Could you restate it  just briefly?  >> Alta Charo: Sure.  Just as we now, with the  question of atomic bombs, have  tried to control their  proliferation through the use of  law and treaties, wouldn't we  expect that if we were to engage  in a Manhattan Project on  viruses using synthetic biology  that we would eventually have to  confront a proliferation of that  technology and again try to  control it through laws and  treaties.  And we've seen how difficult it  is to do that and in the end it  may be perfectly impossible to  do that through law and  treaties, and it may be really a  matter of culture and trust not  law that decides whether or not  these new technologies really  spread and really get used.  Yeah?  >> Treaties are just paper.  They are only good by the  parties subject to them.  All it takes is one nihilist who  gets a hold of this technology  and spreads it through.  Especially something where maybe  a nuclear explosion would be a  one time event that's a horrific  thing to many people but a thing  like a supervirus could be  spread and become a global  catastrophe.  >> Alta Charo: Tell me,  if at the dawn of the modern  era in physics when  the basic science research, not  the bomb building, the basic  science research on fission was  being done and the first  theoretical and early  experimental efforts were going  forward that suggested that we  could use this to unleash  tremendous powers and people  began talking about all of the  great possibilities, limitless  energy sources, clean energy  sources that would not require  us to burn fossil fuels that  will heat our planet and choke  our lungs, to uncover the  secrets of the atom and  ultimately understand the nature  of physical reality, would you  have called for a halt to this  research because of its possible  misapplications?  If somebody could have spelled  out an equally specific kind of  vision of its use in weaponry  and as an agent of terror or  that the energy sources carried  risk as well as benefit, would  you have thought maybe we  shouldn't pursue the basic  science research?  Mike?  >> And the other side of the  coin is that the ability to  synthesize large pieces of DNA  has enormous potentials.  Many of us believe extending  life spans decades, many  decades, easing pain and  suffering, could be open ended.  So we've painted a bleak picture  of synthetic biology but the  other side of it is potentially  mind-boggling in terms of  comforts and ease. 

 Number one, number two my  virologist Ann Palmberg tells me  that many virologists don't  think it's possible to make a  supervirus because a virus  doesn't want to kill you quickly  and outright.  It wants to sort of hang around  and get as much, suck as much  stuff it can without killing you  outright.  And a virus that would kill  people quickly wouldn't  propagate globally.  So it's not clear but I just  want to end by saying though 90%  of the time when we say things  like that, we're wrong.  (laughter)  She didn't say that, but I am.  (laughter)  >> Alta Charo: I'm glad you said  that because it's a humbling  moment because these discussions  are not theoretical, they're  very real.  And they're discussions that  lead to actual voting questions  for people like you and your  kids and your siblings and  everybody around you.  1970s, right?  1970s with the advent of  recombinant DNA technology.  The first time that we really  began to understand at that  level the ability to manipulate  genes and change the genetic  makeup of an organism.  And this was the subject of a  wildly passionate debate  throughout the United States. 

 It was a debate around whether  or not this was too dangerous to  tinker with.  What if we create an organism  that runs rampant that is not  naturally controlled through our  ecosystem because it's totally  novel just like the rabbits that  were introduced in Australia  totally overran their ecosystem  in the -- in the south here in  the US.  So how can we possibly embark  upon research in this area if  there is this risk of some  ultimately catastrophic  consequence from a single  failure.  Others objected because they  said this was simply taking too  much in human hands.  That there was something  fundamentally wrong about  changing the nature of nature.  That this was something that  should be left to the god or  gods, however one conceives that  part of the world.  And that this was not supposed  to be something within the power  of humankind.  For others, it was about a much  more concrete set of concerns  about downstream applications  that they imagined might be  terribly destructive to the  moral fabric of society.  For example, we would ultimately  be able to change the genes in  our own bodies and change the  nature of what it means to be  human.  Or to change the traits of the  children that we're expecting by  altering their genes in the egg,  in the embryo, in the fetus or  even in the live born baby. 

 And so spelling out all of these  consequences many people argued  that recombinant DNA research  should simply be forbidden,  completely.  And, in fact, that argument won  the day in one very prominent  city in the United States that's  associated with higher education  and research and  that's Berkeley, California.  And to this day if you go to  Berkeley you will find nary a  biotech company.  You will, however, find the  neighboring jurisdiction called  Emeryville which is about a  square mile tucked between  Berkeley, Oakland and San  Francisco, chock a block with  fancy high-rises and expensive  buildings with new equipment and  biotechnology companies by the  dozen.  Because that was a different  jurisdiction.  Something you didn't know.  All right.  This is great.  Because I usually sit in his  lectures and learn from him.  The point is that this was a  decision by the voters. 

 With tremendous consequences  based upon their notion that  it's up to them to decide what  science should be done and what  science shouldn't be done.  And furthermore the assumption  that this was a question that  should be answered by the voters  based upon their instincts.  It doesn't have to be submitted  to some expert body that decides  whether or not their instincts  are technically correct, whether  their risk assessments are  correct.  It's not something that has to  overcome some presumption of  liberty.  It could be regulated or  forbidden as easily as we can  regulate or forbid the drinking  age at 17, 18 or 19 depending  upon our whim.  It was an ordinary activity  without any special political or  Constitutional protection.  So these kinds of questions  about social control are not  theoretical, they're real and  they're recurring.  Right?  Same kind of debates arose with  regard to cloning much more  recently, and you may recall  that cloning, which is not stem  cell research, although we've  been trying very hard to make  people understand this, cloning  is something that also has come  in for a notion of  criminalization as an act of  social control based on moral  fabric and some notion about  possible downstream harms.  Cloning consists of taking a  cell, an ordinary cell like one  from your cheek, we take out the  nucleus, which is like taking  out the yolk of the egg and  leaving just the egg white, and  we put in the nucleus of another  cell, a different egg yolk that  has different genetic material  in it.  And the part of your own skin  cell that remains, the  equivalent of that egg white,  will jump start this new  nucleus, this new egg yolk, and  will make that whole new cell  begin to act like it's a  fertilized egg. 

 It acts like any fertilized egg  would, and it begins to divide  and the cells specialize and it  creates a new organism.  And this is how you can take,  for example, a cell from one cow  and take out its nucleus and put  in the nucleus from another cow  and create a new cell.  It's made up of the material  from two different cows, the  nucleus from one and the  cytoplasm, the surrounding  material, from another.  And it will divide and grow more  or less normally, depending on  your luck.  And you can have a live born  calf from this.  If a scientist in North Dakota  or South Dakota or Michigan,  New Hampshire, Rhode Island,  Virginia, South Carolina,  Georgia, and it used to be Iowa  but they repealed it, if any of  the scientists in any of those  places did that experiment with  a human cell, they would go to  jail.  I'm not kidding.  This was truly sending  scientists to jail for this kind  of research.  And the basis of this was, let's  fill in the blanks.  What would be the basis for  criminalizing this kind of  research?  People here might well have  wanted to criminalize that  research in Wisconsin. 

 It's certainly true that our  state legislature twice tried to  criminalize that research in  Wisconsin.  So we know that there's support  for that notion here in this  state.  What would be the reasons to  criminalize that research from  the outset?  >> Fear.  >> Alta Charo: Fear of what?  >> Misuse.  >> Alta Charo: Misuse how?  >> Harm to others.  >> Alta Charo: So what would be  the harm to others?  >> Once you can do it to a cow  you can do it to a human.  >> Alta Charo: We're only  talking about criminalizing  the work in humans,  so we're already there.  We've already  jumped right past that.  >> Mutations.  >> Alta Charo: So we would  criminalize it  because we fear that it would  cause mutations in humans?  >> Yes. 

 >> Alta Charo: Okay,  but that's assuming  that we're going to take this  to live birth, isn't it?  >> I guess.  >> Alta Charo: So if I promise  not to take it to live birth  so that there's no birth defect  to be experienced by a baby,  have I eliminated the reasons  why you might want  to criminalize it?  >> Then you're killing a  potential human.  >> Alta Charo: Then you're  killing a potential human.  It's an interesting little rock  and hard place.  We can't not kill it but we  can't kill it so therefore we  can't do it at all, right?  Seriously, but that's been one  of the arguments that you walk  yourself into this kind of a  box.  Any other reasons why you might  want to criminalize this?  Yes, sir?  >> Well, regarding -- and for  the people who have this sort of  stuff, it seems hypocritical to  me to be against both cloning  and abortion since cloning would  be one of those pro-life people  since cloning is life.  >> Alta Charo: Right, but the  people in the antiabortion  movement who favor  criminalizing cloning research  often favor it for just the  reason you and I were  discussing, which is that they  think it's wrong to bring  children to term who were  conceived through cloning, but  they also think it's wrong to  destroy any entity created  through cloning that has even a  theoretical biological potential  to be brought to term.  And so, specifically, to avoid  this dilemma they would oppose  cloning at the outset.  So I don't know that it's  hypocritical, it's complex.  And the reasoning is rather  circuitous, but it is reasoning  that one can follow you just  have to have the patience to  kind of walk through all the  steps and the process. 

 Yeah?  >> (inaudible)  Making a race of  people that genetically maybe  want to be superior in some way.  >> Alta Charo: Is that harm  to third parties exactly  or is that now  some new reason we have to  decide whether or not we're  going to control science?  >> (inaudible)  (laughter)  >> Alta Charo: Seriously,  is that about harm to humans  or is that about harm to  a third party or is that  something else now that we're  talking about?  >> It's kind of harm to a second  party, is it not?  Does it show perhaps a kind of  disrespect to the kind of person  that would come out of the  process.  You're inviting somebody to be  born into the world to be, not  born perhaps literally or to go  through the process, but to come  into the world in an unnatural  process without being able to  guarantee that person would be  able to live a normal life.  Isn't that kind of a second  person disrespect?  And if we care about ethics in a  certain kind of -- rule-based  way we don't want to be that  disrespectful.  >> Alta Charo: There's two  things going on.  I'm not sure which one exactly  most concerns you, it might be  both.  One is the possibility, and it's  similar to what this gentleman  was saying, that this technique  of conception might result in  children who have a high risk of  birth defects and other kinds of  medical problems.  And that it's wrong to bring  children into the world in a  manner that increases those  already high, relatively high,  not that many kids have birth  defects but even one is too  many.  So it's disrespectful to treat  the potential for a life with  such disregard that you would do  it in this manner that is not as  careful as possible.  That's one. 

 The second which I heard when  somebody said a race of  superbeings.  It had to do with this  imagining, particularly back in  the late '90s when cloning was  being discussed, about its  potential use to isolate those  humans that were viewed as  superior examples by some  measure and then clone from  them, so that you'd make more  copies of them, right?  Most of this, by the way, based  on incredibly bad biology.  Seriously, most of these  imaginings were based on  fundamental misconceptions about  the degree to which certain  traits are heritable or reliably  heritable.  So there was this concern that  we would clone Saddam Hussein.  As if you can clone a  personality.  There was, on the other hand, at  least the hope that if we cloned  him we would also clone a lot of  Mother Theresas with this  thought that somehow you could  clone selflessness as opposed  to, in fact probably more likely  in her case, cloning a tendency  toward scoliosis.  (laughter)  But nonetheless based  on bad biology or what the  imagining was this concern that  you see in lots of utopian  science fiction about the  creation of different strata of  society in which some people are  advantaged even before  conception let alone birth and  education, and they're  advantaged because of the means  of their conception.  That this would exacerbate  differences among us.  That's not so much harm to  second or third parties as it is  more of a concern about changing  the very kind of fabric of human  relations.  It's much more inchoate. 

 And since we're here in Madison  I'm going to assume that most of  you are by general national  standards part of the wacky left  and, therefore, you must be  appalled at the thought that we  would deliberately create  different strata of society with  some advantaged even before  birth.  That's terribly wrong because  there's the great tradition of  egalitarianism and equal rights  and equal opportunity.  And a concern that these  advantages would accrue not only  to some people and not others  but usually to people who are  already advantaged people.  Who were rich and had access to  technology and to medicine.  And so the concern about this  kind of change to the moral  fabric of society really came  often not from the right but  from the left.  And it spread, in the case of  cloning, it spread beyond just  the kind of more science  fiction-y creating strata of  society.  Which really envisioned a hugely  widespread application of this.  But it also emerged in more  modest ways.  Such as cloning is going to help  us to better understand a whole  variety of things having to do  with reproductive genetics.  And it's going to lead to  improvements in things like  genetic screening and genetic  testing, which in turn will lead  more people to take advantage of  genetics in order to choose when  and how to conceive or whether  or not to carry to term or in  some cases may even help us down  the line in making very  selective alterations in order  to change specific genetic  sequences which will start as an  effort to correct a significant  disease but will ultimately end,  this was the speculation, with  people wanting to use it for  enhancement purposes, often  frivolous enhancement purposes,  right?  And to my distress, being who I  am, the constant example was  that everybody would want their  kids to be blond and blue-eyed. 

 Which pretty much knocked out  me, my whole family and  everybody I grew up with in New  York.  (laughter)  This kind of concern  about moral fabric is something  I think we're more familiar with  associating with the concerns  that are raised by people from  the conservative version of the  religious movement.  That the concern about the  alteration and structure of the  family is one that should lead  society to criminalize things.  Let's criminalize surrogate  motherhood because it's  unnatural for one woman to carry  a child for another.  Let's criminalize, excuse me,  let's criminalize...  >> Nylon.  >> Alta Charo: Nylon?  I think you're taking the  word fabric a little too  literally.  (laughter)  I'm sorry, that's not fair.  But it's true that with almost  any technology you can spell out  this kind of concept.  But seriously from the  conservative religious wing  where I think we're more used to  hearing arguments about the  moral fabric of society, we hear  about the interference with the  kind of natural order of things. 

 Sexuality should be between a  man and a women and anything  other than that is unnatural.  It's unnatural because it's not  biblical.  It's unnatural because it's not  consonant with the biology of  reproduction.  Interestingly it's not natural  because it's not consonant with  the theory of evolution which in  other arenas takes a bit of a  hit.  But that kind of argument that  we shouldn't do things that  undermine how it is that we  organized ourselves, and  therefore we should use the  government to stop the very  research that would lead there  is something that we tend to  associate with conservativism or  religiosity, but my point simply  is that we begin to hear it also  from people who are secular,  people who are spiritual but not  associated with a traditional  denomination and people who are  quite left as opposed to quite  right in their voting patterns.  So this is one of these concerns  that we may not immediately  raise as a legitimate basis for  criminalizing science.  And yet when push comes to shove  it's exactly the argument many  of us reach toward when which  justify our own instinct that  certain things simply shouldn't  be done.  There's a clinic in Michigan run  by a guy named Mark Hughes, he's  a very talented doctor.  And he is one of the foremost  practitioners of something  called pre-implantation genetic  diagnosis.  And I want to raise this now  because there's a movie that's  about to come out, there's been  a lot of trailers for it,  "My Sister's Keeper."  And I confess to not having read  the book and I'm sorry now that  I haven't because I need to read  it very fast before this movie  comes out. 

 The practice that Mark Hughes  has in Michigan and the premise  of this movie are related.  What Mark does is work with  couples who for one reason or  another do want to have a child  but they don't want to have a  child if certain traits are  present.  Typically, it's people who have  lethal recessive disorders in  their families and they want to  avoid the birth of a child but  they also want to avoid the need  to terminate a pregnancy because  they are uncomfortable with  abortion, whether for religious  reasons or simply because, as  everybody knows, it's very  traumatic for many people even  if they think it's a moral thing  to do or the right thing to do  or the legal thing to do, it's  not necessarily something that  you want to do.  So what they'd like to do is  they'd like to have Mark screen  the embryos that they've  produced and tell them which of  the embryos carry these lethal  combinations so that the  children who are born really  have very little to look forward  to except a short, painful life.  And he can do this for a number  of traits, not all of them, but  for a number of them.  So far, so good.  But then somebody comes in and  says in my family we have the  BRCA1 sequence that makes the  women in the family quite prone  to early breast and ovarian  cancer.  Indeed, in many cases it can put  you up at about an 85% chance of  having breast or ovarian cancer  by the time you're 55.  And having this trait now  increasingly has led women to  actually have their breasts and  ovaries removed while they're  still young and healthy in order  to prevent the disease from ever  taking root.  Pretty drastic kind of thing to  do. 

 Not something you'd wish on  anybody.  And so a couple comes to Mark  and says we'd like to screen our  embryos so that we only use the  ones that are free of the BRCA1  mutation when it comes to using  the embryos to start a  pregnancy.  Well now we're off and running.  Lively debates.  Is this an abuse?  Yes the disease is serious, but  this embryo could result in a  child who has decades of happy  life before this event, likely  as it is, does or does not  occur.  Who knows what will happen in  the intervening 40 or 50 years,  maybe we'll find a preventive  measure or an easy cure so that  it's no longer a big deal.  Why in the world would you begin  to expand the indications for  pre-implantation genetic  diagnosis.  And now the literature begins to  discuss whether or not the  government should have a list of  those things for which you can  get pre-implantation genetic  diagnosis.  Yes, you can for Tay-Sachs  disease.  Yes, you can for --. 

 No, you can't for BRCA1.  No, you can't for APOE which is  an indicator for susceptibility  to earlier onset Alzheimer's.  And you have the government  making lists.  Not the individuals who are  making a decision about whether  to be a parent, not the doctors  about making a decision about  what they think of as  responsible medical practice,  but it's now the city council.  That's a sobering thought.  You think the Congress is bad,  think about the city council  making these decisions.  (laughter)  But that's my point.  In Berkeley it was the city  council that forbade genetic  engineering research.  So these are very local, very  personal decisions in the hands  of every person in this room.  Maybe I've scared you by talking  about the city council so now  you're going to let parents go  ahead and screen against APOE  and BRCA1. 

 I might not think that's a great  idea, I might think that's a  little bit over the top but I'm  not willing to let the city  council decide because that's a  cure worse than the disease.  (laughter)  But now the next  thing that happens, and this is  the subject of the Jodi Picoult  movie, there is a couple that  has a child already that suffers  from Fanconi's anemia, a genetic  disorder.  And this child is in dire  straits.  The child could be saved with a  bone marrow transplant.  The trouble is bone marrow  transplant, not so easy.  If you're lucky you've got a  relative who's got a matching  immunological signature so you  can use their bone marrow, but  if you don't have that getting a  matching bone marrow transplant  from a stranger, very tough.  I don't know how many people  here have actually gone to give  blood.  I hope it's virtually all of you  who are not medically  contraindicated, but I can't say  that most people here do it  regularly every eight weeks  which is about as often as you  can do it, and so there's a  constant struggle just to get an  adequate blood supply.  This is why there's the kind of  raft of ads around July 4th when  we hit the roads and have an  unfortunate number of traffic  accidents and we need more of a  blood supply.  Well, giving blood is nothing  compared to giving bone marrow  which is a far more elaborate  procedure, and it has some real  pain and discomfort associated  with it and it has some medical  risks. 

 They're not huge but they're  real.  And they're more significant  than the risk of a hematoma, a  big black and blue that you've  occasionally gotten when you've  got a newbie nurse doing your  blood draw.  (laughter)  Listen, they're a lot  better than the newbie interns  at the hospital.  Never ever let an intern draw  your blood in July.  (laughter)  So it's really hard  to get bone marrow.  So what these parents figured  out was that what this kid  needs, their child with  Fanconi's anemia, what this  child needs is a relative with  the right type, the right bone  marrow type.  There is no living relative yet  so what they're going to do is  they're going to have a child  and hope that the second child  has the right bone marrow type.  Now that takes a while.  Takes time to conceive, takes  time to gestate and then after  birth you can test and then  you've got to wait yet more time  before the child is old enough  that bone marrow can be taken.  So what if instead of doing that  and then maybe failing, because  you're going to fail about one  every four times, I'm mean three  every four times getting exactly  the match you want. 

 What about now making a lot of  embryos and then choosing to use  the ones that are matched to  your existing child.  I see somebody here going oh, my  God.  Because now we're where we're  terribly concerned.  Is the concern that the second  child is going to be loved less  because the second child was  born with a purpose?  Is that the concern?  Certainly one of the things that  people worry about that the  parents will love this child  less because the child was born  to be an instrument.  Or somebody here, I think it was  you, talked about Kantian theory  and Kant had talked about making  sure people are always ends in  themselves and not solely a  means to an end.  But that does not mean that you  cannot be both an end in  yourself and a means to somebody  else's end.  Would we necessarily love such a  child less?  If a child is born because two  people are hoping to hold  together a marriage.  If a child is born because they  live in a rural economy era  where children are the ones who  work on the farm.  If a child is born because you  fear death and want some taste  of immortality, do these things  make you necessarily love your  child less?  Many children are born with a  purpose, right?  So we have to step back and ask  why exactly are we upset about  this?  And yet, very often there have  been calls to prohibit exactly  this kind of action by these  parents up in the Michigan  clinic, that this is outrageous,  this is just way beyond  acceptable.  It led to a national debate in  the United Kingdom where they  actually license all of their  reproductive technology clinics  and where those clinics can only  do what the government permits  them to do. 

 And they had a national debate  that lasted a number of years  before they allowed the first  use of pre-implantation genetic  diagnosis indeed for Fanconi's  anemia.  And then the debate moved on to  what other kinds of illnesses in  your existing child would  justify using this technique in  the conception of a second  child?  Kind of a rehearsal of the whole  question of using PGD at all.  And again, are the concerns  really that there is a harm to a  third party here, the second  child?  That is concrete and  predictable?  Or is it a more inchoate concern  that we now begin to view our  children differently.  That we back away from a very  romantic image that we have  about our marriages and our  children in America and return  to a much more instrumental view  of marriage and children that  you may recall is rampant  through much of the literature  that you studied in high school.  Seriously, think back to your  Jane Austen novels where the  number of, the amount of money  in the four percents and five  percents that your dowry brought  was a relevant consideration in  whether or not a man would  choose you and vice versa,  whether or not you would marry  such a man.  Think about the Roman times  where adoption was routinely  engaged in in order to ensure an  inheritance pattern so that  money would flow down in  particular ways.  Think about the royal marriages  throughout history.  We have a modern romantic notion  of the family that's really not  in accord with the historical  notion.  Is this technology a return to a  more traditional notion of  family or is it a return to  something we are happily beyond  and we fear returning to in any  sense at all because we feel  we've evolved beyond it.  So PGD, illegal, not illegal in  the United States?  State by state there have been  suggestions that we should ban  it. 

 Even among liberal kind of, and  I'm saying liberal in the sense  of both left and vaguely  libertarian, at least morally  speaking, people in the world of  ethics and policy have advocated  creating a national regulatory  agency.  That would oversee all  reproductive technologies.  Which people should be allowed  to use them?  Should I be allowed to use a  surrogate mother only if I'm  infertile or can I use it simply  if I'm, can I use a surrogate  mother simply because that's  what I choose to do.  What if I'm not infertile but I  run the risk of worsening an  existing disease if I carry a  pregnancy and I don't want to  run the risk even though I might  manage to have the pregnancy  safely.  Regulates in vitro  fertilization.  Can I use donor gametes?  Is it okay?  We recruit students here at the  UW Medical School all the time  to be sperm donors for our  infertility clinic.  Used to be when Sandy Shapiro  ran it there would be signs all  over the medical school saying  I'm looking for a few good men.  (laughter)  Is there something  fundamentally wrong?  In the 1950s we thought of sperm  donation as adultery.  It was an interference with the  marital bond and it was  absolutely criminal.  And then by the 1970s it was  practiced widely but quietly,  and by the 1980s it was  positively being celebrated. 

 And we had the advent in the  1990s and into this decade of  specialty sperm bank.  There's a Viking sperm bank in  New York.  I'm serious.  It specializes in recruiting  donors who come from  Scandinavia, they should have  set up shop here.  (laughter)  Because they found  that nationally donors who were  taller, broader and blonder were  indeed more popular.  So why not just create a sperm  bank that consists of pretty  much nobody but that kind of  guy.  I see people laughing but  immediately if you check the  news clippings you're going to  hear calls for making it illegal  to have such a sperm bank.  How can we put human heritage on  the market?  How can we subject it to the  ordinary forces of capitalism?  It's true that there's probably  nary a guy who's 5'10" or under  represented in any of the sperm  banks around the United States.  It's true.  Why do it. 

 Basically if you can get taller  sperm, why use shorter sperm?  (laughter)  And we understand why  the concern exists because it  does upset, to some extent, the  fabric of our lives.  We are used to, in our romantic  views, of looking at potential  partners as a package.  I love your sense of humor which  is why the fact that you're five  foot three is really not that  important.  It would be nice if you were  taller but it's just not nearly  as important as your sense of  humor.  So the package is attractive,  not every element, the package.  But when you are looking through  a catalog in which you have 12  characteristics and only 12  characteristics and nothing  else, you tend to focus on each  of those 12 and you try to  optimize each one because you're  no longer able to look at a  person as a package, you look at  them as discreet individual  traits.  Each of which can, by somebody's  standard, be optimized.  And I would bet that few of us  in this room would ever pass  that test.  There are few people who are  really attractive, you might.  (laughter)  But most of us are in  the range of ordinary and we  wouldn't pass that test. 

 And I absolutely know that if my  mother had gone to a sperm bank  it's unlikely that she would  have gone to the catalog and  said yes, I want the guy who's  five foot three and a half,  tends to bald, tends to have a  pot-belly, that would not be the  person she would have picked.  But there had to be something  else in the package that made  her get interested.  And this is a change in how it  is we view one another.  So maybe we should forbid this  because it changes the fabric of  society.  Of course you might want to  forbid the Miss America contest  along the way.  (laughter)  I know that we're  coming to a close and I know  that this seemed very rambling,  but the only point I'd like to  make sure is brought home is  that when we discuss how society  should control science I think  we start with the assumption  that we're entitled to control  it to some extent.  That it's part of a society and  in a democracy we get to control  all aspects of the society.  But that there is a temptation  over and over and over to  embrace a rhetoric of freedom  but a practice of fear.  And in the face of specific  examples of the exercise of  freedom, whether by scientists  or parents or doctors, when we  see decisions of which we  disapprove, when we see  decisions we think were morally  wrong for that individual, you  betrayed your second child by  making that child an instrument  for the betterment of your first  child.  Or when we think something is  changing the fabric of society  because it changes our ability  to view marriage and family  romantically. 

 Or when we fear that it might  upset the kind of demographics  of society because it runs the  risk of exacerbating the already  profound differences among us  based on early nutrition and  early education and even uterine  environment, uterine exposures  and now exacerbated by the  possibility of some kind of a  future genetic manipulation as  yet beyond our reach but somehow  down the pike.  And we look at these examples  and we say there ought to be a  law.  And it's very tempting each time  to say that's a bad consequence,  I need to control that.  It might hurt somebody, it might  hurt society or it's simply  wrong and there ought to be a  law.  And sometimes there should but  it's always worth checking  oneself and asking if you are  really comfortable with setting  a pattern of having every  application, every use of  technology subject to that kind  of majority decision-making or  if the price of liberty in one  area is the tolerance of  developments that are either  unsavory or, somebody used the  word serendipitous earlier,  serendipitous.  Because I hazard to say if  somebody had asked what is the  impact of the television at the  outset of TV, there would have  been somebody who said you know  what television's going to do,  it's going to drive us indoors,  we'll no longer talk to our  neighbors, we won't engage in  public collective entertainment,  we'll go back inside and we'll  entertain ourselves or with just  one person, our children will  sit still for hours and they'll  all become obese and they're  going to die early from diabetes  and we're going to fill our  brains with mindless  entertainment that does nothing  to improve our character or the  quality of our lives.  And on that basis I see somebody  going yeah, that's kind of  right, that kind of sums it up.  (laughter)  And on that basis we  would have made an argument for  why this should have been  forbidden instead of seeing  where it takes us, good and bad.  The images from Tiananmen Square  and from Tehran this week, which  are brought by television and by  twitter of all things, and the  serendipitous kind of  developments in science.  And so the one thing I would  suggest we at least consider, at  least as a matter of political  philosophy if not as  Constitutional philosophy, is  whether we ought to maybe think  about science just like speech  as something that should be  given higher degree of  protection. 

 That's not to say you can't  forbid it under all  circumstances.  Some speech you can forbid.  Speech that incites people to  immediate violence can be  forbidden by the government even  with the first amendment, but  the burden is on the government  to show that nothing less than  forbidding it or severely  curtailing it will protect  against a really significant  harm.  What if we were to think about  science getting the same kind of  protection.  We can regulate it or even  forbid it if it's absolutely  necessary to guard against a  truly terrible thing.  But the burden is on the  government to show that nothing  short of that will suffice.  And other than outside those  narrow examples that there is a  general freedom, a presumption  of freedom to pursue inquiry  wherever it takes us, to publish  the results, whatever they may  be, and to allow the development  of technology, whatever it might  be and then just see where  things go.  It's not an argument that's  likely to get the support of the  current Supreme Court in its  interpretation of first  amendment freedoms.  But it is an argument that has  merit for debate at least when  it comes to, I think, being  quite frequent and predictable  votes we're all going to be  facing on whether or not to stop  or slow the development of  science.  Last question and then I'll let  you guys go. 

 >> Do you think that our  discussions about bioethics will  ever get out ahead of the actual  science happening?  >> Alta Charo: Yes, but often  not productively.  Because what happens is when  bioethics gets out ahead of the  science is that it tends to get  wrapped up in debates around  things that are actually science  fiction.  So you find people debating  whether or not we should allow  for the development of distinct  strata of society and they've  skipped right past not only the  technical issue was whether or  not you could do it but all the  economical, social and cultural  forces that might make that an  unlikely outcome.  We've debated the so-called  Nobel sperm bank, right?  Which actually never had any  Nobel prize winners in it.  (laughter)  It's true.  -- the one Nobel prize winner,  he did donate but his sperm was  never used.  (laughter)  And everybody else  that was in that sperm bank was  basically a graduate student.  I am the only person ever to  have been on a Congressionally  financed study tour of  California sperm banks.  And I interviewed...  (laughter)  He did say I had a  rich career that he couldn't  describe in complete detail. 

 (laughter)  And I interviewed the  lunatic that ran that place,  Robert Clark Graham, and he  basically his theory of  superiority was to recruit  anybody he had heard on the  radio or seen on television who  seemed rather smart and he would  send a note saying would you  like to contribute.  (laughter)  And they would have  to fill out long forms to show  that they had no significant  diseases in their family, but  the interesting thing was he  would only select people who  worked in math and science.  And I asked him why he wouldn't  take people who worked in the  humanities or the social science  he said well, with the  humanities and social sciences  you just never really know how  smart they actually are.  (laughter)  But nonetheless, you  will find article after article  after article in the ethics  literature debating whether or  not we should forbid specialty  sperm banks because, of course,  if you have one women will flock  to it and that's immediately  going to create these two  different strata of society by  virtue of this rush to use it.  Even though the evidence is that  it won't.  Pre-implantation genetic  diagnosis, the articles, full of  articles saying everybody is  going to do this, everybody is  going to use this and they're  going to try to use it for more  and more trivial things.  They're going to want to select  against a kid who has curly hair  because straight hair is easier  to manage.  Well this is just silliness  because in order to do PGD you  have to have embryos outside the  body which means you have to use  in vitro fertilization, and let  me tell you something conceiving  through IVF is not nearly as  much fun, let alone as much  cheap, as conceiving through  sex.  (laughter)  So honestly the need  to do IVF is a limiting factor  in how widespread something like  PGD would become.  It's going to be couples who are  already doing IVF for whom PGD  might be a kind of easy add on  and couples who have a  significant medical issue to  deal with. 

 But it's not everybody.  Everybody isn't going to do this  because most people aren't going  to want to have to go through  the IVF.  So when ethics tries to get  ahead of technology,  unfortunately it tends to spin a  little out of control because it  does it in a very  de-contextualized way.  And it doesn't see the big  picture of who uses it, how  often do they use it, what are  the consequences of using it,  what lessons are being learned  from using it, and what  moderates its use.  That gets lost in the shuffle.  Okay, thank you again and again  for your patience and again and  again my apologies for the late  start.  I hope you had a wonderful  experience here.  Thank you.  (applause)