cc  >> Dominique Broussard: Welcome  to the University Forum  of Summer 2009, Communicating  Controversial Science.  Tonight, we have with us Susan  Lederer, Professor of Medical  History and Bioethics,  Chair of the Department  of Medical History and Bioethics  of the University  of Wisconsin-Madison.  Susan has published extensively  on the history of human and  animal experimentation.  In 1994, she was appointed by  President Bill Clinton to the  advisory committee on human  radiation experiments, and  contributed to the committee's  lengthy report on the Cold War  radiation research sponsored by  the federal government.  She has also served on  presidential commissions for the  German government, charged with  exploring the conduct of human  experimentation during the  period of national socialism.  She will be speaking on the  topic "Radiating Truth  and Justice, Cold War Human  Radiation Experiments  and the Media."  Please join me in welcoming  Susan Lederer.  (applause)  >> Susan Lederer: Thank you.  So I was actually here  on Tuesday.  And I think I'm going to do what  I saw Professor Wiley do, which  was just to orient you to where  I'm actually coming from.  I am not a scholar of  communication. 

 My training is as a historian  of science and medicine.  But for most of my career, I've  focused if not on controversial  science and its communication,  what I'll call controversial  scientific methodologies.  The use of animal subjects.  The use of human subjects.  And as you'll see, one other  character who has been very  useful in framing discussions  about responses to biomedical  innovation.  So what I first worked on was  the early 20th century American  opposition to the use of animals  in experimentation.  And in particular, to the use of  both visual imagery and other  kinds of arguments to make the  case that, you know, the child  who's not taught respect for  object grows up, in this case,  or never grows up, and turns to  the destruction of animal life.  And I could have brought the  next image, which is called  "Only a step," which shows the  animal experimenter sort of  opening the door into the  charity hospital for the poor  and unfortunate.  So it's only a step from one to  the other.  Or cartoons like this, which  also appeared in an early comic  magazine in the United States,  and "Life," about sort of,  you know, turning the tables,  as it were, on the vivisecters. 

 I was also particularly  interested in some of the gender  dynamics of some of these  discussions.  "Life" was reinvented in 1936,  as a photo-weekly.  And it was used as a very  important propaganda tool for  the scientific medical  establishment.  This is a story about who's for  animal experimentation and who's  against it.  It contrasts these two  sort of full-length images of  Marion Davies, who actually  was the mistress  of William Randolph Hearst,  and a dancer.  I'll call your attention to what  they're wearing, even though  they're against vivisection or  experimentation.  And this is in contrast, just  the heads of six men who are  for animal experimentation.  They include the Alexis Carrel,  who received the Nobel Prize  for his work on transplantation  in 1912.  The Surgeon General,  Thomas Parran.  Karl Compton, who would become  president of MIT, and so forth. 

 And I'll just remind you that  sort of what was the event that  precipitated the first major  federal legislation governing  the use of animals in research.  It was a photo essay  in "Life Magazine"  in February, 1966, about  "Concentration Camps for Dogs,"  very evocative language.  But it's essentially about  organized pet theft rings that  would steal dogs in an area and  then go take them to medical  schools, and other places and  sell them, and about the  dreadful conditions under which  they were being kept.  And Congress received more mail  about the protection of animals  than it did about the Vietnam  War that year.  So it was able to mobilize.  Another activity that I  participated in was to curate  for the NIH and National Library  of Medicine, an exhibit on  Frankenstein, both looking at  sort of the scientific milieu  that Mary Shelley drew on to  create this story, but also sort  of the use of the Frankenstein  myth and metaphor to frame  discussions.  I think the person who coined  the term, "Franken-food," or  "Franken-farm" deserves credit  for a very powerful rhetorical  device that already polarizes  discussion.  And again, sort of just looking  on, this is actually the first  image of Frankenstein that  appeared on the front  of the 1831 edition of the  novel, the scientific  developments that Mary Shelley  drew on both the early efforts,  like blood transfusion.  This is a gravitator, in which  a husband could donate blood  to his wife, who had experienced  terrible hemorrhaging.  Or also to the experiments  conducted by the Italians,  Galvani and Volta, in which  they attempted to reanimate  dead flesh, with the application  of current, electricity. 

 And this is obviously from more  contemporary renderings.  This is Green Peace's use of the  Frankenstein imagery in  genetically modified Frosted  Flakes.  You know, they don't even say  Frankenstein.  They don't have to because we  recognize the elements of it.  But tonight, what I'm going to  focus on, sort of as my  experience as a member of the  Advisory Committee on Human  Radiation Experiments in 1994  and 1995.  And to focus a little bit on the  role that the media played in  both mobilizing attention, and  in the outcomes of the work of  that committee.  So I will sort of disclose, I  got to meet Bill Clinton, and it  was an interesting experience.  But I won't go into that.  (laughter)  Instead, I want to take you back  to December 7, 1993.  And you'll note, of course, the  significance of the date of  December 7. 

 It's the anniversary of the day  that would live in infamy,  characterized by Roosevelt,  relating to the Japanese attack  on Pearl Harbor, precipitating  American participation  in World War II, the Japanese  bombing, and so forth.  It was on that date that the  Secretary of the Department  of Energy, Hazel O'Leary,  a controversial appointee  by Bill Clinton to head that  department, who held an Openness  Initiative Press Conference.  And this represented quite a  departure for the Department of  Energy, which tended to eschew  openness, as it were, rather  than to embrace it.  And she had a number of  bombshells to drop.  It turns out that American  weapon scientists had in fact  exploded more nuclear bombs than  they had previously  acknowledged.  She acknowledged the amount  of plutonium that had been  generated by the U.S. during  the Cold War.  And she also took stock of the  human radiation experiments.  These are experiments involving  American citizens who were  exposed in a variety of  circumstances to ionizing  radiation.  It could be through the  deliberate release of Iodine 131  into the environment,  to injections of plutonium,  to the use of a whole soup  of radioactive cocktails,  as they're sometimes called.  And one of the things that  distinguished O'Leary's sort of  response to this topic was to  say that, "The Cold War is over,  we're coming clean."  We're prepared to sort of  lay open the role of the  government in these activities. 

 So I think one of the questions  that's worth considering though,  is why did human radiation  experiments become an issue as  they would on the Presidential  agenda?  And for that, I need to sort of  take you back a little bit  further to the realization that  in fact that things like the  plutonium injections, when this  was a new sort of dangerous  chemical, actually the name was  itself classified during the  period of initial injections  into individuals.  These weren't new in 1993.  They'd been openly discussed  in the scientific literature.  And they'd also been discussed  in the halls of Congress.  And in fact, in 1986,  Congressman Edward Markey,  a democrat from Massachusetts,  held public hearings, published  a document called "American's  Nuclear Guinea Pigs," that  described 31 human radiation  experiments, including  the 18 injections of plutonium  into 17 American citizens and  actually one Australian child.  But what a change between 1986  and 1993.  Well, for one thing, the  presidents had changed.  And I think there is an  important recognition of the  larger political milieu in which  these occurred.  It was under a democratic  president, rather than under a  republican president who was  strong on national security and  defense of the United States  during the Cold War.  But of course, it was also  during Reagan's presidency that  the sort of the symbol of the  Cold War, the Berlin Wall,  erected in 1961 to separate  Berlin into two zones,  the American Zone  and the Communist Zone,  was actually destroyed. 

 So it's actually under a  republican president, if you  will, that the Cold War is  officially ended.  But the point I want to make is  that the Cold War is over by the  time the openness initiative  takes place.  And perhaps it's unusual, but I  think that it is important to  call attention to the role of an  individual reporter, that as a  single actor, this journalist,  Eileen Welsome, working for--  I hope nobody's here  from New Mexico.  But an obscure newspaper  in Albuquerque,  the "Albuquerque Tribune."  Not obscure there, although it  has since gone out of business,  like many of course.  It could be the "Boston Globe"  next.  But she became very interested  in this story.  She knew that there were  some 18 recipients.  She was able to use, and it took  her years, if not a decade, the  Freedom of Information Act to  obtain as much information that  she could about those 18  individuals who participated,  unwillingly or at least  unknowingly, in these plutonium  injections.  And what she did was to provide  names, faces, life stories, the  testimony of their surviving  family.  And that, I think, was a very  powerful public tool in raising  these on the presidential  agenda. 

 President Clinton appointed an  advisory committee on human  radiation experiments.  It was Chaired by bioethicist  Ruth Faden, from Johns Hopkins  University.  Over the course of 18 months,  the 14 members of this  committee, of whom I was one,  were supposed to look at  six million documents.  Now, you can imagine that  I certainly didn't look at  six million documents.  I don't know that anyone did.  But there were identified, some  six million documents.  There were hearings that had a  dedicated portion for public  comment, input, and sort of  report testimony.  One of the things the White  House wanted was a number.  How many human experiments were  there involving radiation?  And although this may seem like  a trivial or simple question.  It proved to be a very difficult  question to answer. 

 Is an experiment, does include  sort of testing the bombs in the  Marshall Islands, the exposure  of the Marshall Islanders.  Does it include the exposure to  radon and uranium of Navajo  miners who were producing, who  are actually mining material  that would be used for  processing into nuclear weapons?  Does it include the soldiers who  are being tested at ground zero,  not for the effects of  radiation, but to see whether  they're going to panic when the  bomb goes off, because that's a  very important question if you  have to mobilize troops.  And so, as part of the activity,  we produced some 900+ page  report, and made recommendations  about the state of the  protection of human subjects in  the United States, not only  during the Cold War, but as it  was in 1995.  If you want to read more, I  encourage you to.  You can get this text.  And one of the results was that  President Clinton actually  offered an apology on behalf of  the nation, that is on behalf of  Americans to those individuals  who participated, unknowingly or  unwittingly, and to their  detriment in this.  The apology was issued on  October 3, 1995.  This is just a brief quote from  Clinton's lengthy apology:  But he's a very eloquent  speaker, but as Ruth Faden  liked to say, "He was a man  who liked to apologize."  Now, I will also point out now  that sort of one of the curious  things is that the work of this  advisory committee was, or ran  closely with another sort of  test of our national values.  The huge media interest in  awaiting the outcome of the  trial of O.J. Simpson.  And in fact, the apology, the  press conference at which the  president received the report  had to be rescheduled so that it  would not conflict with the  handing out of the O.J. verdict. 

 And I would imagine, maybe some  of you are far too young to  remember that date.  But I think most people might  recall where they were when they  heard the verdict, and certainly  in a number of American cities,  it was accompanied by violence  and sort of rioting, and so  forth.  So I thought it would be useful  just to spend a few minutes on  what were the human radiation  experiments.  And let me say just a little bit  more.  As I said earlier,  it's a tremendous range.  A release of radioactive Iodine  131 into the environment,  exposing people downwind from  nuclear installations like  Hanford and at the Nevada test  site.  There were also the plutonium  injections that I've already  referred to.  There were a series of  experiments involving testicular  irradiation of prisoners in  prisons in Washington, Oregon  and Idaho.  And there were a host of  radioactive tracer studies that  involved such, that we might  today consider a vulnerable  populations, as pregnant women  in a clinic at the Vanderbilt  School of Medicine.  The physicians or researchers  were interesting in studying  iron metabolism during  pregnancy, administered this  so-called cocktail so that they  could follow the course of that  metabolic study. 

 Or the Fernald School Science  Club.  The Fernald School at the time  was a school for "retarded  boys," that's the term that was  used.  Their parents could enroll them  in the "science club," where  they participated in sort of  special activities.  But one of the activities was  also eating Quaker Oats oatmeal  cereal with milk that had also  had a radioactive isotope  tracer, so they could study sort  of metabolic processes on this  group, as well.  In addition, there were studies  of patients who had been badly  burned at places like the  Medical College of Virginia.  And in a very serious group of  studies involving whole body  radiation that were conducted at  the Cincinnati General Hospital  under physician Eugene Saenger.  It turned out that these were  patients who were mostly African  American, who had advanced  cancer, whose entire bodies were  being irradiated in research  that was funded by the  Department of Defense, so-called  dual purpose research, the  intent being not only to treat,  hopefully, their cancer, but  also to learn the effects of  a certain number of rads on the  human body in varying dosages.  So let me say just a little bit  more about the plutonium  injections, because I would  argue that those are the ones  that were responsible for  mobilizing the whole panoply  of interest in human radiation  experiments.  And if you want to pursue this  further, I mean, Eileen  Welsome's series in the  "Albuquerque Tribune" went on  to win the Pulitzer Prize.  And then she published,  subsequently, sort of her  account of both uncovering this  series of experiments, but also  the sort of the experience of  following the story as it went  forward. 

 And again, sort of plutonium was  a new substance in the early  1940s.  There was great concern about  what the effect was on the  workers, that is American  workers who were processing it  so that it could be used.  And it was plutonium that was  used in the bomb that was  dropped on Nagasaki  on August 9, 1945.  But obviously, there was  interest in producing more of  this.  And after 1949, when the Soviets  had detonated their own atomic  weapon, sort of the beginnings  of an organized arms race.  So who were the subjects of  those plutonium injections?  I already mentioned  there were 18.  They were spread out in  Oak Ridge Tennessee, at the  Strong Memorial Hospital  in Rochester, New York,  at the University of Chicago  in the Midwest, and at the  University of California  at Berkeley in the far west.  The first person that we know to  have received it was an African  American truck driver, badly  injured in an accident, and was  expected to stay in the hospital  for 45 days.  And the idea was that they  wanted to see the body burden of  this particular chemical, this  element.  And they anticipated that his  leg was going to be amputated,  so that he wouldn't have the  long term effects of that. 

 He was injected with plutonium  in distilled water.  And I'm just going to go through  some of this, because I think,  again, part of the power of the  plutonium studies was having  sort of names and family members  associated with them.  CAL-1 means University of  California.  Diagnosed with terminal cancer,  one of the things that you'll  see is that doctors were not  very good about predicting the  longevity of some of these  patients.  He was expected to die within  six months, but he lived, it  turned out, 21 years following  his injection.  Simeon Shaw, who was an  Australian child who was flown  from Sydney to Berkeley to  undergo treatment under  circumstances that still remain  murky.  But he died two years after his  injection.  Elmer Allen, another of the  California injectees, whose leg  was amputated because of a  sarcoma in the bone.  He wasn't expected to survive,  but ended up living 44 years  following his injection.  One of the Chicago patients,  Arthur Hubbard, injected in  April of 1945, but died later  that year from mouth cancer. 

 Una Macke, also from the Chicago  site, died 17 days following her  injection.  Amedio Lovecchio, at the Strong  Memorial Hospital, 14 years.  William Purcell, a patient with  hemophilia.  You can see it's a broad range  of indications for which they're  being injected.  And it's interesting, they're  not at regular intervals.  Eda Schultze Charlton, also at  the Strong Memorial Hospital in  Rochester, New York, died in  1982, 37 years following  injection.  Jean Daigneault, Cushings  syndrome patient.  Paul Galinger, with Lou Gehrig's  disease.  John Mousso.  Edna Bartholf. 

 Janet Stadt.  Fred Sours.  Daniel Nelson.  Mary Jeanne Connell.  And again, I think part of what  made this a morally considerable  problem was knowing their names,  having the testimony of some of  their family members, who  disputed what seemed to the be  the government account, that  they had in fact, obtained  consent for these experimental  injections.  And so, you can imagine what  some of the critical questions  were in trying to reconstruct  what actually happened to these  patients at the dawn of the Cold  War.  What were they told, if  anything.  Did informed consent actually  exist as a concept.  And this was sort of greatly  debated.  And what harms did these  patients actually suffer. 

 Now, I think it's safe to say,  none of us would want to be  injected with plutonium.  But I think for some of the  physicists it was a real  question, was there necessarily  a bad outcome, in terms of  physical harm, associated with  this.  And certainly, that was an  argument that would recur in  talking about radioactive tracer  studies, which involved very low  exposure to radiation.  To be sure, this was radiation  that you did not consciously  consent to, in most cases.  But involving very little  physical harm.  So is there such a thing as  dignitary harm, was one of the  topics debated.  And I have to say, that as a  historian of American medicine  and American science, to me one  of the things that was really  interesting, and sort of  painful, and perhaps poignant  about this process, was that the  sort of need for secrecy, on the  one hand, one of the things that  was so disturbing about so many  of these studies was that they  were purportedly secret studies,  conducted on the American people  on the behest of the American  government.  And yet, it seemed on the one  hand that the need for secrecy  was entirely unnecessary,  because the archives are contain  sort of scores, if not hundreds  of letters from people writing  in to volunteer to participate  in any test possible, in order  to help, sort of help the United  States government, again, sort  of fighting the enemies in the  Cold War.  People are willing to serve as  subjects.  They're volunteering. 

 They're lining up.  They're willing to do it for  free.  There's also a question about  sort of what does "secret"  actually mean.  On the one hand, some of the  critics of human radiation  experiments claimed that these  were secret studies.  And yet, if you look at the  newspapers of the day, they're  actually talked about in the  newspaper.  So it sort of renders sort of  questionable the claim, well,  how secret is secret, if people  are describing their  participation, sort of in the  Richmond press, or in the  Washington press, or in the  New York press, or somewhere.  And so, let me give you just one  example of what I consider sort  of an irony of the effort to  protect American subjects in  this, sort of in the course of  the debate over human radiation  experiments.  In June of 1994, there was an  op-ed piece published  in the "Washington Post,"  called "Burning Secrets."  In it, the author who was a  long-time critic of the use of  America's investment in nuclear  power, he described top secret  experiments at the Medical  College of Virginia, which is a  medical school in Richmond, that  involved radiation, and badly  burned African American  patients.  He went on to say that these  experiments directly led to the  death of numbers of African  Americans, sort of in this city,  in the late 1940s and the late  1950s.  The surgeon in question was a  man named Everett Evans. 

 He had been a consultant to the  Atomic Bomb Casualty Commission,  which was a group of American  observers who went into the  cities of Hiroshima and  Nagasaki, not to treat people,  but to chronicle the effects of  radiation exposure over a long  period of time.  He'd been to Hiroshima.  He returned and set up one of  the first burn units to treat  people in the United States, at  Richmond, at the Medical College  of Virginia.  And like every surgeon of his  generation, he was particularly  interested in improving  treatment for burns.  One of the great tragedies that  every surgeon of his generation  points to was the Coconut Grove  fire in Boston in 1942, in which  in an extraordinarily crowded  nightclub, fire broke out, some  400 people eventually died as a  result of the fire.  And hundreds more were badly  burned.  And just the experience of  fanning out these large numbers  of badly burned individuals to  Boston's hospitals, really  galvanized a sort of a  generation about how they could  do it better, how they could  improve burn care for this group  of people.  And one could actually chronicle  over the course of the 20th  century, sort of these  catastrophic fires.  The Hartford Circus Fire, which  followed on the heels of the  Coconut Grove fire.  But of course, it was also sort  of the experience with a  different kind of burn at  Hiroshima and Nagasaki that  physicians were particularly  interested in, in how they might  treat them, how they might  prevent them. 

 And that is, of course, the  flash burn.  The next series of images, I  hope are not too disturbing.  But they're part of the report  that we eventually published.  And these are germane to the  issue because every, well,  at least many of American  physicians, sort of in the late  1940s and early 1950s, believed  that an atomic attack in an  American city was inevitable.  It was not, sort of, it was  which city is going to be next?  Was it going to be LA, or  Detroit, or New York, or  Chicago?  And how could Americans  anticipate and prevent large  numbers of deaths associated  with that.  So, they're particularly  interested in studying the  effects of burns through a  variety of techniques.  And these are horrific burns  that individuals sustained, both  children and adults.  And these are the fortunate  ones, who survived those  cataclysmic events.  But back to this "Burning  Secrets" story in 1994.  One of the things that the  author pointed to, was how  Evans, this surgeon, interested  sort of in creating an  experimental burn that could be  used as a sort of standardized  burn, which they could evaluate  a variety of treatments, among  other things, actually went to  the Department of Defense, and  sought to have his research  classified Top Secret. 

 The argument was that Evans  knew, sort of how problematic  this was, how invasive and  dangerous it was to the human  patients of his at the hospital  in Richmond, that he was able to  get the Department of Defense to  classify the work Top Secret,  and to prevent any more  information coming out of the  laboratory.  But one of the things that this  person didn't investigate more  fully, was why, I mean, what  really motivated Evans to seek  this change in the  classificatory status of his  experimentation.  And again, I've already sort of  alluded to the fact that he was  conducting experiments.  He was actually burning medical  students and burning college  students.  This was reported in the press.  He actually paid students for  their participation.  He was interested in, sort of,  again, in creating a  standardized burn on human skin.  He was interested in the role  that pigment might play in the  kind of burn.  And actually, based on his  research, he was able to claim  that an African American  standing at the same place as a  white person would have mostly  second and third degree burns,  would be burned twice as bad as  a white person standing there.  Again, in research that was  funded by the Department of  Defense. 

 But I would argue that in fact,  he wasn't concerned by the  public learning that he was  burning people.  After all, they were medical  students.  They had the opportunity to  volunteer for this.  I hope they volunteered.  He was also paying students from  historically Black, at a nearby  college, to participate.  And again, they were happy to do  it as part of the war effort.  Well, his concern, and if one  sort of looks more deeply at the  materials, was not necessarily  again, badly burned individuals  who are being studied with  radioactive isotope tracers to  study sort of the needs of fluid  metabolism once you have a  severe burn.  What he was really concerned  about was that people were going  to learn that he was burning  dogs that he'd obtained from the  local animal shelter.  And again, this kind of goes to  his desire to create a standard  burn that could be used as the  basis of comparing various  treatments and therapeutic  regiments.  But it involved sort of exposing  these shaved and anesthetized  animals, but in some cases,  burned to death. 

 And so, that was the concern,  that somehow, the animal  protectionists would interfere  with his supply of animals from  the local animal shelter, which  led him to successfully obtain  the classification of Top Secret  from the Department of Defense.  It wasn't concern or worry about  the human subjects.  And in fact, one could even  argue that Evans was ahead of  the curve in that before he even  subjected human beings to  experiments, he actually sought  advice from the Atomic Energy  Commission about should he be  providing informed consent,  should he have obtained written  documents that indemnified he  and the federal government in  case of a bad outcome, and to  prevent a lawsuit.  Unfortunately, we couldn't find  the response to those kinds of  letters.  So let me say just a little bit  about sort of what the sort of  this 18-month, 900-page public  exercise in trying to get the  truth about the conduct of  experiments involving human  radiation during the Cold War.  And we actually focused on  1944-1974, as the critical  period of inquiry, trying to  figure out, well, just what were  rules about using human  subjects.  What were individuals told?  What should they have been told  at that time?  And what if anything can we  learn from this?  Well, I should say that our  report, despite its great length  and the careful work that went  on, was not welcomed by all.  This is my favorite review of  the report from Dr. David  Egilman, from Brown University,  who said that the report of the  Advisory Committee on Human  Radiation Experiments...  I find this a little bit  confusing.  Does that mean because of its  antiquity or because the Bible  was so bad for medical ethics?  I don't know. 

 But I will say that, and I'm  singling out Dr. David Egilman  because this is such a memorable  quote.  But he was also sort of a member  of the minority opinion that  claimed that low-level radiation  was in fact hazardous to human  bodies.  And this was a debate that sort  of ranged over the course of our  deliberations, because some  people claim that you don't have  a large enough group to know  that it was the radiation that  was responsible for these rare  cancers that occurred in a small  population.  So it's a question about, well,  how much evidence do you need?  Sort of, what is a compelling  case?  And when do you institute  appropriate protections?  One of the concrete things that  came out of the report, however,  was the appointment by President  Clinton of a National Bioethics  Advisory Committee, who sought  to improve the kind of machinery  that was in place and remains in  place of institutional review  boards to protect human  subjects, and also promised sort  of much greater vigilance to  ensure that well, that happened,  you know, 30 years ago.  What can we say about the  participation of human subjects  today?  Are our protections sufficient  to guarantee that we won't need  such an advisory committee 30  years from now.  And some of you may know, and  this is going back maybe a  decade now, but there was a  period of time where a number of  leading American research  institutes were shut down for  violations of the laws and  policies regulating the  protection of human subjects.  For example, the Office for  Protection of Research Risks  halted all research at Duke  University in 1999.  There was a creation of a new  office at Health and Human  Services.  Other schools that were shut  down sort of, again, sort of in  the wake of this greater  vigilance about human subjects,  included the University of  Pennsylvania, when an  18-year-old young man named  Jesse Gelsinger, died after his  participation in a genetic  therapy experiment.  And also, the death of a normal  volunteer at Johns Hopkins  University in a study involving  asthma and the closure of  airways. 

 Another concrete result of the  Human Radiation Experiments, and  the attention that they received  in the 1990s, was a series of  lawsuits that were brought by  survivors, or in most cases by  their surviving families.  So for example, in the plutonium  injectees, the federal  government settled out of court  with 16 of the 18 families.  You can sort of see some of the  details up here about the  monetary compensation they  received.  These are the deaths that I  referred to, the death of Jesse  Gelsinger in 1999 in a gene  transfer experiment, and the  death of Ellen Roche in this  Johns Hopkins asthma study.  There was a settlement involving  the boys, the retarded children,  at the Fernald School, in which  not only the federal government  but MIT and Quaker Oats agreed  to pay, as well as the  Commonwealth of Massachusetts.  In the case of total body  irradiation studies at  Cincinnati, a federal judge  approved a $5.4 million  settlement for the families of  patients who had participated in  the TBI studies.  Although, in this case, the  physician who was surviving,  I haven't checked recently  to see if he's still alive,  but he's elderly.  He refused to provide  an apology.  He said in fact that his conduct  was above reproach, that he had  taken the necessary safeguards  to protect these individuals.  And that in fact, the rules had  changed, by which he was being  evaluated. 

 A Vanderbilt settlement  involving those women who had  received radioactive cocktails  during their pregnancies.  That's my editorializing.  I apologize to all law students.  And in fact, so much so that  this is an article that I took  from "Annals of Internal  Medicine," talking about sort of  the rise of litigation in human  subjects research.  Another irony that I didn't  mention or sort of go into was  that one of the great concerns  that American researchers had in  the 1940s and the 1950s was that  they were going to be sued in  case of a bad outcome.  That's really interesting,  because there are virtually no  lawsuits that I have seen by  people who consider themselves  harmed, that that's a great  concern.  And in fact, for example at  Harvard, they're doing studies  of a blood substitute, which was  another of the great sort of,  what's the word, sort of Holy  Grail that's being sought, a  blood substitute.  They actually went to Lloyds of  London and asked them to write  an insurance policy for them in  case of a bad outcome.  It turned out that the policy  was going to be like two dollars  per person, and that was deemed  too expensive, I mean, as an  element to pay as part of the  research.  And then, you know, horror upon  horror, one of the prisoners who  was participating in this study  actually died during the course  of the study. 

 But there wasn't a lawsuit.  His mother received a posthumous  pardon on behalf of her son.  And the grant of the scientist  paid for the burial of the  research subject.  I think it's perhaps one of the  only times in which the federal  government authorized the  interment of one of their  research subjects.  So finally, I'll just say, and  open it up to questions, is that  communication, I think, played  a crucial role, not just in  controversial science, which has  been the focus of your eight  sessions, but in controversial  scientific methods.  And sort of what I've been  talking about is the exposure of  human subjects, under what  conditions is it appropriate?  Is it defensible?  How do we know that the  expectations and rules change,  and how should we understand,  sort of those activities,  actions of people in the past  in the face of threats  to our national security?  So I'll end there.  (applause)