Welcome Allen M. Hornblum (Hornblum.com), Judith L. Newman (Penn State), Gregory J. Dober, and Host Dr. Jeffrey Kaye

Against Their Will: The Secret History of Medical Experimentation on Children in Cold War America

Against Their Will: The Secret History of Medical Experimentation on Children in Cold War America is a crucially important work, closer to today’s headlines than we might like to admit.

From the well-known scandals at New York’s Willowbrook State School and Massachusett’s Fernald Developmental Center – both covered in the book – to more recent revelations about use of orphans and babies as guinea pigs in HIV and herpes-related experiments, stories related to informed consent and safety regarding use of children by medical and psychological researchers continue to haunt the practice of science.

By both federal regulations and widely accepted ethical doctrine, children are recognized as especially vulnerable members of the population. There are many laws and regulations that were written to protect them from the adult world, and that recognize their special status as protected individuals in society.

But those kinds of protections, including those written into laws meant to protect children as objects of medical or scientific experimentation, have repeatedly broken down, or been ignored.

Last March a special Presidential bioethics commission approved a limited and conditional set of trials of anthrax vaccine on children. While the approval was made subject to certain “safeguards,” anthrax vaccine critic Dr. Meryl Nass wrote, the commission’s decision was nevertheless “a green light to test a dangerous anthrax vaccine in children, and a second green light to test other ‘countermeasures’ in children, to circumvent existing FDA standards.”

Allen Hornblum and his co-authors, Penn State professor Judith Newman and writer Gregory Dober, would know all about this. Their book is a plea for humanist ethics in science and medicine as opposed to the political and economic expediency that too often dominate mainstream medical science.

Hornblum has trod similar ground before. In 1999 he authored Acres of Skin, a book that exposed the use of unethical experimentation on prisoners, a practice that continued for many decades. The lessons of that book – and even some of the actors involved, like Holmesburg prison doctor Albert Kligman – cross over to the work on children.

Hornblum and his co-authors trace the hideous practice of using children, infants and pregnant women as guinea pigs back to the ideology of the eugenicists in the early 20th century. The authors repeatedly show that these kinds of experiments were not isolated instances of medical or scientific malfeasance, but were part of science’s mainstream culture. (Kudos to academic publisher Palgrave Macmillan for publishing this work.)

A 1961 radiation-related experiment on children conducted at the Wrentham State School for “feebleminded” and “defective boys” in Massachusetts, where children were injected with radioactive iodine, “was coordinated by researchers from Harvard Medical School, Massachusetts General Hospital, and the Boston University School of Medicine, and it was supported by the Radiological Health Division of the US Public Health Service” (p. 145).

Behind the Cold War and eugenicist rationalizations, the authors demonstrate that careerist ambitions and stubborn narcissistic self-aggrandization were contributory causes to the sorry history they describe. Indeed, it is frightening to read over and over how avidly the doctors and scientists followed along, or even led the way in the evisceration of ethics involved.

For decades doctors and scientists had turned to youth warehoused in orphanages, children’s homes and hospitals as apt subjects for medical and other experiments. The children, who could not make any informed consent, were often labeled “feeble-minded,” or were children with Downs Syndrome or cerebral palsy, or were just too poor and illiterate to make any fuss. Their parents often were not notified of the experiments, or they were overtly or subtly coerced to give consent.

As Hornblum, Newman, and Dober wrote: “The sad history of children, especially institutionalized ones, being used as cheap and available test subjects – the raw material for experimentation – started long before the Atomic Age…. Experimental vaccines for hepatitis, measles, polio, and other diseases; exploratory therapeutic procedures such as electroshock and lobotomy; and untested pharmaceuticals such as curare and Thorazine were all tested on children in hospitals, orphanages, and mental asylums as if they were some widely accepted intermediary step between chimpanzees and humans. Occasionally children supplanted the chimps” (p. 9).

Hornblum and his co-authors conclude that while lots of lip service has been given to the promulgation of the Nuremberg code of medical ethics, putting the interests of research subjects and their informed consent before anything was replaced by a Cold War emphasis on “the advancement of science” and “medical progress.” According to the late Yale professor and respected ethicisit Jay Katz, quoted in Against Their Will, “the Nuremberg Code ‘was relegated to history almost as soon as it was born.’”

Hornblum and his co-authors trace back the origins of using children in medical experiments to assumptions about the “heroic” in science and medicine; to an ideology of eugenics that took the U.S. by storm in the late 19th and early 20th century; to the exigencies of total war that unfolded during World War II and subsequent Cold War calculations, replacing the protection of children, prisoners, etc. under the titanic clash of different states and social systems.

With reforms leading to the promulgation of more stringent ethical safeguards and the rise of institutional review boards, some of the worst practices fell into disuse. But the authors document use of medical or psychological experiments on children even into the 1990s. They warn, as well, that many of the experiments on children have been moved off-shore, to countries with less oversight, far away from the prying eyes of U.S. media.

Whether it was the U.S. amnesty to the Nazi-like doctors of Japan’s Unit 731, or the kinds of experiments Allen Hornblum has described in U.S. prisons, orphanages and state hospitals, or the recent revelations of post-World War II U.S. Public Health syphilis experiments on illiterate women in Guatemala, or even revelations about the “battle lab in the war on terror” that was the experiments on interrogation and torture at Guantanamo, the reality of what was revealed at Nuremburg challenges our myth of being a “civilized” or humane world.

There is much to talk about and chew over on these very important issues. I welcome Allen Hornblum, Judith Newman, and Gregory Dober to FDL Book Salon.

 

[As a courtesy to our guests, please keep comments to the book and be respectful of dissenting opinions.  Please take other conversations to a previous thread. - bev]

206 Responses to “FDL Book Salon Welcomes Allen M. Hornblum, Judith L. Newman, Gregory J. Dober, Against Their Will: The Secret History of Medical Experimentation on Children in Cold War America”

BevW October 13th, 2013 at 1:46 pm

Allen, Judith, Greg, Welcome to the Lake.

Jeff, Welcome back to the Lake, and thank you for Hosting today’s Book Salon.


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Allen M. Hornblum October 13th, 2013 at 1:59 pm
In response to BevW @ 1

Thanks for your help

Jeff Kaye October 13th, 2013 at 2:00 pm

Hi Allen, Judith, and Greg. Thanks so much for taking your time to join us today. Beverly, thanks for facilitating all this.

Let me start with a question for you, Allen. – What made you take up the issue of experiments on children after spending years on controversies surrounding prison experiments?

Gregory J. Dober October 13th, 2013 at 2:00 pm

Hi Allen

Jeff Kaye October 13th, 2013 at 2:01 pm

Hi Judith – How did you get involved in writing this book with Allen and Greg?

dakine01 October 13th, 2013 at 2:01 pm

Good afternoon Allen, Judith, and Greg and welcome to Firedoglake this afternoon. Hey Jeff!

Allen, Judith and/or Greg, I have not had an opportunity to read your book so forgive me if you address this there but I do have a question. Did you have an opportunity to interview any of the doctors who perpetrated these atrocities on children? How did you avoid getting “medieval on their a**?”

I lived for a few years in Waltham, MA though before the story broke about the Fernald School participation. If I remember correctly, I think I saw where John Silber (then President of BU) was one of those trying to defend the indefensible actions of these Mengele wannabes. Are the admins of BU, MIT and the other sponsoring orgs still trying to defend themselves?

Jeff Kaye October 13th, 2013 at 2:01 pm

Hi Greg – Same question as to Judith. How did you get involved in doing this book?

Ted Chabasinski October 13th, 2013 at 2:01 pm

It seems to me that a big issue here isn’t only that children were experimented on, but WHICH children? definitely not the sons and daughters of bank presidents.

Gregory J. Dober October 13th, 2013 at 2:01 pm

Thank you Jeff. Around 2006, I was putting together a thesis for a master’s degree in bioethics. At the time, the Institute of Medicine recommended that the current federal regulations to do research in prisons be substantially relaxed. Who better to get info from than the author of Acres of Skin, Allen Hornblum? Allen started working on Sentenced to Science sort of a biographical sequel to Acres at the time. We kept in touch over time and compared notes. My masters are in bioethics and health care ethics, one being from Loyola and one from Duquesne. Though they are more clinical in nature, I had an interest in research ethics. Through casual conversations, Allen and I agreed that it would be interesting to see what was going on with children research in the past. Some time after, Against Their Will was in the pipeline.

Judith L. Newman October 13th, 2013 at 2:02 pm
In response to Jeff Kaye @ 5

Starting with my own dissertation on children’s concepts of death in 1977, I’ve been sensitive to the easy exploitation of children in research. As a teacher, I have always included a discussion of research ethics in my child development classes and I devote much time to research ethics in the Ethics course I teach every semester to Psychology majors. Also, I’ve been a good friend of Allen’s since the early 1970’s and so we’ve had these discussions about research abuses throughout the decades.

Jeff Kaye October 13th, 2013 at 2:03 pm
In response to Ted Chabasinski @ 8

Hi Ted, Thanks so much for coming by here today. Your observation re “which children” is very much to the point and I know is taken up in the book.

Allen M. Hornblum October 13th, 2013 at 2:03 pm
In response to Jeff Kaye @ 3

It was during my research on the use of prisoners as test subjects in the 1990s that I came across numerous examples of institutionalized children also being used as guinea pigs for medical research. Dr. A. Bernard Ackerman, a great dermatopathologist and supporter of my prison research, encouraged me to do a follow-up book on how the medical community routinely misused children as raw material for experimentation. In fact, years and several books would go by, but I did eventually tackle the subject of children as test subjects.

Elliott October 13th, 2013 at 2:03 pm

Hi, Welcome to the Lake, and thank you for writing this book.
Growing up, I thought the Nuremberg trials meant something – medical experimentation like this was horrible wrong.

In any case did the people running experiments like these have to pay for their crimes?

Jeff Kaye October 13th, 2013 at 2:04 pm

Regarding your teaching of ethics at Penn State. Are college students today aroused by the issues you and your co-authors raise in this book?

BevW October 13th, 2013 at 2:04 pm
In response to Ted Chabasinski @ 8

Ted, Welcome to the Lake. Thank you for being here today.

Judith L. Newman October 13th, 2013 at 2:05 pm
In response to Elliott @ 13

We read of some cases where articles had to be retracted, federal grants were suspended for some number of years, and, in the rare case such as that of Andrew Wakefield, medical licenses are revoked.

Jane Hamsher October 13th, 2013 at 2:05 pm

Thanks so much for that terrific intro Jeff! and thanks to Gregory, Judith and Allen for being here today. It is such a scary and overwhelming story. When people hear about it, they think “what can I do.” Which seems like a good first question — if people were going to target their ire, or look to those with the power to change things, where would they start?

Jeff Kaye October 13th, 2013 at 2:06 pm

Greg, on the notes about the authors on the book, it says that you write for Prison Legal News? Can you say more about that publication and your work for it?

Allen M. Hornblum October 13th, 2013 at 2:06 pm
In response to dakine01 @ 6

Yes, I did interview a couple docs, but they were quite defensive. Didn’t really want to discuss the past. Some argued they had done wonderful things for science and put their bodies to good use.

Gregory J. Dober October 13th, 2013 at 2:06 pm

I started doing stories with PLN back in 2007. Ironically, the editor Paul Wright asked Allen if he could recommend anyone that worked cheaper than Allen. Allen recommended me! Actually, Allen had to take a hiatus to work on Sentenced and Harry Gold. It (PLN exposure) had more of an impact than I originally had thought. In March 2008, I did the feature article titled, “Cheaper than Chimpanzees: Expanding the Use of Prisoners in Medical Experiments” critiquing the Institute of Medicine’s (IOM) report to change federal regulations to allow easier access to prisoners for researchers. I followed that up with an article a few months later about a company pedaling junk science in prison drug rehab, at taxpayers expense for profit. Both stories received citations (footnoted) in an article published in the more academic and prestigious, University of California Law Review.
This year, I have an article challenging Pennsylvania’s Hep-C protocol in prisons and next month an article will critique neuroscience as trial evidence. Prophetically, I ended my 2008 article challenging the IOM with the following conclusion: “If the protections of Subpart C (45 CFR 46) of the regulations can easily be changed, how long will it be before Subpart D, Children Involved as Subjects in Research, is scrutinized and likewise found to be too restrictive for researchers.” As you noted in your intro; the anthrax vaccine revelation, the time be here that I predicted.

Jane Hamsher October 13th, 2013 at 2:06 pm

And thank you too ted for being here today. Would be very interested to hear your thoughts on the subject.

Jeff Kaye October 13th, 2013 at 2:06 pm
In response to Jane Hamsher @ 17

Thanks, Jane! And good question.

Allen M. Hornblum October 13th, 2013 at 2:06 pm
In response to Ted Chabasinski @ 8

You are so right Ted. Only the powerless were sacrificed.

Judith L. Newman October 13th, 2013 at 2:06 pm
In response to Jane Hamsher @ 17

We need folks to get involved with organizations such as Vera Sharav’s ALLIANCE FOR HUMAN RESEARCH PROTECTION: Advancing Honest and Ethical Medical Research at http://www.ahrp.org

Jeff Kaye October 13th, 2013 at 2:08 pm

That reminds me of Seligman’s reply re just doing science when he responded to use of his learned helplessness theories for Mitchell and Jessen’s torture program.

After doing the research on Acres, and its follow-up book, Sentenced to Science, was there anything surprising to you as you did the research on Against Their Will?

Allen M. Hornblum October 13th, 2013 at 2:08 pm
In response to Elliott @ 13

Relatively few paid for their actions. In fact, they were rewarded with promotions, patents, and academic titles. the Nuremberg Code was for public consumption – it was not to be actually followed.

Jeff Kaye October 13th, 2013 at 2:09 pm

Judith and Greg, What experiments on children did you find most troubling?

Allen M. Hornblum October 13th, 2013 at 2:09 pm
In response to Jane Hamsher @ 17

People should be ever vigilant and try to say aware of what is happening in the medical arena.

Gregory J. Dober October 13th, 2013 at 2:09 pm

For me, most of the vaccine experiments. Not knowing the consequences of these injections ad they basically were Phase I studies as we know it today.

Ted Chabasinski October 13th, 2013 at 2:10 pm

Maybe I should try to answer my own question. I was experimented on because I was labeled a schizophrenic. The children who will be experimented on with anthrax vaccine will to be sure be foster kids or from poor families. People like me and the other children experience more than medical experimentation. Our society seems to create more and more “throwaway people” whose lives are deemed of no value.

Judith L. Newman October 13th, 2013 at 2:11 pm
In response to Jeff Kaye @ 25

I know that this question was intended for Allen, but if I could also reply about the “surprises”, the sheer quantity of such unethical research was staggering. What stunned me the most was the clear distinction between treatments or enrichments that had the likelihood of yielding a positive result being conducted with healthy children in their own homes with parents but if risks/harms were possible or likely, then these especially vulnerable children that we focus on were targeted with no informed assent from them or informed consent from parents in most cases.

Jeff Kaye October 13th, 2013 at 2:11 pm

I will definitely have to follow up your work, as well as Judith’s. I’m wondering if you have any thoughts on why the loosening of such restrictions now.

Gregory J. Dober October 13th, 2013 at 2:12 pm

Not enough people are willing to volunteer for such dangerous science.

Allen M. Hornblum October 13th, 2013 at 2:13 pm
In response to Jeff Kaye @ 25

Nothing really surprised. It was the same old story, the elite using the least powerful of us for their own designs.

Jeff Kaye October 13th, 2013 at 2:13 pm

Hence the importance when individuals like yourself speak out, or when Allen and Judith and Greg take up stories such as yours and make them real to a larger audience.

Gregory J. Dober October 13th, 2013 at 2:13 pm

Volunteers are a commodity for the researchers. They are in very short supply now.

Judith L. Newman October 13th, 2013 at 2:14 pm
In response to Jeff Kaye @ 27

It is difficult to pick a “most troubling” as it was just difficult throughout to be reading of newborns or challenged adolescents being exploited repetitively and non-therapeutically in most cases. I do think that the psychosurgical and electrotherapies were every bit as horrific as the more invasive procedures.

Jeff Kaye October 13th, 2013 at 2:14 pm

Sobering, to say the least.

Did anything from your research not make it into the book, and if not, what subject or event do you wish you’d had time or space to include?

Allen M. Hornblum October 13th, 2013 at 2:15 pm

Ted, maybe you would like to state a little bit about your history?

Jeff Kaye October 13th, 2013 at 2:16 pm

Even more shocking to me was that this targeting of the most vulnerable children was undertaken by so-called top researchers or clinicians, and premier hospitals and university research centers.

What response have you gotten from your academic colleagues?

Judith L. Newman October 13th, 2013 at 2:16 pm
In response to Jeff Kaye @ 38

Research with premies in the 50’s (Oxygen and lighting), research with Native American children, etc. I am sure there are many studies we did not uncover but that was not our goal- the goal was to sample studies in some major content areas and I think we accomplished that.

Jeff Kaye October 13th, 2013 at 2:16 pm

Greg, what for you was the most important message coming out of this book?

Allen M. Hornblum October 13th, 2013 at 2:16 pm
In response to Jeff Kaye @ 38

vIt was during my research on the use of prisoners as test subjects in the 1990s that I came across numerous examples of institutionalized children also being used as guinea pigs for medical research. Dr. A. Bernard Ackerman, a great dermatopathologist and supporter of my prison research, encouraged me to do a follow-up book on how the medical community routinely misused children as raw material for experimentation. In fact, years and several books would go by, but I did eventually tackle the subject of children as test subjects.

Gregory J. Dober October 13th, 2013 at 2:17 pm
In response to Jeff Kaye @ 38

For me the fact that we couldn’t dig deeper into most of what we found. In addition, this was a problem not only in the US, but Canada and UK as well. Not to this extent but we did exclude those countries for sake of space and continuity.

Gregory J. Dober October 13th, 2013 at 2:17 pm
In response to Jeff Kaye @ 42

The extent of how much research abuse went on with these kids and the fact they (children) never received Nobel Prizes, profits etc. We can all be grateful for many of these advances, but the researchers received the accolades and drug companies received the profits. Many of my friends that read the book noted to me they never realized this happened at others expense. I think Judy put it pretty well when once she noted, “They (children) finally have a voice.”

Jeff Kaye October 13th, 2013 at 2:17 pm

“research with Native American children” – wow, I wish that had been included.

Judith L. Newman October 13th, 2013 at 2:18 pm
In response to Jeff Kaye @ 38

Also, our manuscript was twice as long when submitted but publisher has a format they like to uphold so we had to cut out lots of the material we had written to provide context as well as some of the more recent research abuses as they wanted to focus on Cold War period…and to keep it short!

Jeff Kaye October 13th, 2013 at 2:19 pm

Picking up with a question from dakine01 up above, how did the administrations of BU, MIT and other sponsoring institutions try to defend themselves, or do they still?

Gregory J. Dober October 13th, 2013 at 2:20 pm
In response to Jeff Kaye @ 48

My opinion, they form a committee, say that it shouldn’t have been done then move along and recommit. I believe UPenn seems to never learn from the past

Jeff Kaye October 13th, 2013 at 2:21 pm

It seems to me that investigating the ethical abuses in medical research should constitute its own research program, an important sub-category of bioethics.

What do you or Allen or Greg think explains the medical community’s silence in the face of such egregious acts by certain investigators?

BrandonJ October 13th, 2013 at 2:22 pm

Hello everyone. A bit late, but I can tell the discussion is lively so far.

My question, for any of the authors, is how can doctors and scientists allow themselves to do acts like these? Aren’t they highly educated? What makes them different from other people in the field who reject things like this?

Allen M. Hornblum October 13th, 2013 at 2:22 pm
In response to Jeff Kaye @ 48

Not sure they made much of an effort. They sometimes argue they were practicing research as it was practiced at the time.

Judith L. Newman October 13th, 2013 at 2:23 pm
In response to Jeff Kaye @ 48

I am sure that my co-authors will also want to reply to this one but there are a few cases where decades after the research was conducted (and maybe after lawsuits came to the fore), university PR folks or presidents issued an apology of sorts and spoke to the “good” that this researcher also accomplished. This for us was the kernel around which we wrote – good docs doing terrible things with a teleological justification that the ends justify the means. They can justify what they do/did because the result may have led to or lead to some vaccine, some cure, some discovery. We take the position that the end never justifies the means- that no child should be or should have been sacrificed to serve some greater good. Their lives- even if imperfect- have/had value and they are not to be exploited.

Jeff Kaye October 13th, 2013 at 2:23 pm

Or perhaps they do what people like psychologist Martin Seligman did, going from learned helplessness and charges of association with the US torture program proponents to developing new programs about “positive psychology” or “authentic happiness,” i.e., paste a happy face over it.

Gregory J. Dober October 13th, 2013 at 2:23 pm

We footnote a doc, Avril Kagan that blew the whistle on the Chester Southam cancer experiments primarily in adults. However, we did find his studies that he also used some teenagers. But Dr Kagan, despite great credentials, never seemed to get on more research and ended up moving his career to Coney island Hospital. A far cry from the millions that could be made in research.

Allen M. Hornblum October 13th, 2013 at 2:24 pm
In response to Jeff Kaye @ 50

The medical community seems fairly comfortable with a minimalist reaction to abuses. The entire industry is designed to skirt restrictions and codes of ethics.

Allen M. Hornblum October 13th, 2013 at 2:25 pm
In response to BrandonJ @ 51

The system rewards accomplishment, not the following of ethical or restrained behavior.

dakine01 October 13th, 2013 at 2:25 pm

As a tech note, there is a “Reply” button in the lower right hand of each comment. Pressing the “Reply” will pre-fill the comment number and commenter name you are replying to and makes it easier to follow the conversation.

Note: Some browsers do not like to let the Reply function correctly if it is pressed after a hard page refresh but before the page completes loading

Gregory J. Dober October 13th, 2013 at 2:26 pm
In response to dakine01 @ 58

Thanks

Jeff Kaye October 13th, 2013 at 2:27 pm

The entire industry is designed to skirt restrictions and codes of ethics.

Do you think there is a connection between this and the way so many doctors, nurses and psychologists have been involved in the U.S. torture program, including the use of forced feedings? I know this is a bit off topic, but I also think it is closely related.

Judith L. Newman October 13th, 2013 at 2:27 pm
In response to BrandonJ @ 51

We argue in the book that there was the perfect storm- the near absolute authority of the docs mixed with the strong eugenics movement that led them to see certain populations as of lesser value and finally just the right amount of fear involved with enemy countries and enemy illnesses that needed conquering and who best to serve their country in the only way they could- by sacrificing their otherwise “worthless” selves. Good people do terrible things when all the situational factors are in place – just as good people ignore such acts when the conforming factors are in place.

Jeff Kaye October 13th, 2013 at 2:28 pm

Greg, Judith: What mechanisms or training programs do you suggest medical schools and the medical establishment itself implement to reduce risk to patients?

Gregory J. Dober October 13th, 2013 at 2:28 pm
In response to Jeff Kaye @ 60

Sidenote: Doctors participated in the death penalty as well.

Allen M. Hornblum October 13th, 2013 at 2:29 pm
In response to Jeff Kaye @ 60

If doctors and nurses and researchers can use developmentally delayed and orphaned children in dangerous experiments then they can use captured prisoners and “terrorists” as test subjects or forms of torture. these practices are very close cousins.

Gregory J. Dober October 13th, 2013 at 2:30 pm
In response to Jeff Kaye @ 62

I train docs in Pittsburgh area hospitals, usually on rounds for Pitt. The system itself does not teach enough of the medical ethics. On rounds, they are clueless on something as simple as informed consent and decision making. I don’t expect a room for of philosophers but ethics is bearly touched in training.

Judith L. Newman October 13th, 2013 at 2:30 pm
In response to Jeff Kaye @ 62

I think it ironic that a decade ago when I proposed that an undergraduate psychology program be implemented on our campus, I insisted that an ethics course be a requirement for graduation (and with a grade of C or better no less). These students get 15 weeks saturated with the ethical principles of autonomy, nonmaleficence, justice, veracity, integrity, and beneficence that I would venture to say may be terms unknown to a graduating medical student even today.

Jeff Kaye October 13th, 2013 at 2:30 pm

Yes, excellent point, and still do.

Allen M. Hornblum October 13th, 2013 at 2:32 pm

Dr. Lauretta Bender gave autistic children daily doses of LSD for a year or more. Some may consider that torture. The medical community considered that excellent research.

Jeff Kaye October 13th, 2013 at 2:32 pm

I know this is personal, but I was wondering if any of you would like to comment on the emotional costs of researching and writing a book like this.

Gregory J. Dober October 13th, 2013 at 2:34 pm
In response to Jeff Kaye @ 69

For me, I had some “survivor” guilt. I realize that many of these experiments may have benefited me but someone else paid the price of suffering even if they wanted to particpate or not.

Jeff Kaye October 13th, 2013 at 2:34 pm

Any real heroes out there on this? I mean, in the medical establishment (and besides Dr. Kagan mentioned above).

Allen M. Hornblum October 13th, 2013 at 2:35 pm

Kagan sticks out like a sore thumb and the two others who chose not to participate in Southams experiment.

Gregory J. Dober October 13th, 2013 at 2:36 pm
In response to Jeff Kaye @ 71

Allen may want to note Bernie Ackerman.

Jeff Kaye October 13th, 2013 at 2:36 pm

Clinical psych students out there will well know Lauretta Bender, whose Bender Visual Motor Gestalt Test has been taught to generations of child and school psychologists.

Judith L. Newman October 13th, 2013 at 2:37 pm
In response to Jeff Kaye @ 69

Yes, of course, this was deeply emotional just as it is painful listening to the news every night about other abuses of children- and I say this as a Penn State professor writing this book during the Sandusky revelations and writing this response as my own campus is dealing with a new revelation- or my sadness every night about random, senseless shootings in Phila. and beyond- but being aware and not living in denial or in the dark is always painful. Being aware is also the first step to changing the situation.

Judith L. Newman October 13th, 2013 at 2:38 pm

There may have been many whistleblowers who stopped unethical research from taking place- we will never know as the research may have been terminated. Let us hope those folks were out there.

masaccio October 13th, 2013 at 2:39 pm

Jeff suggests that this kind of experiment isn’t happening today, in part because of the Institutional Review Boards. Is there any way to know if that is true?

Jeff Kaye October 13th, 2013 at 2:39 pm

Yes, he mentioned him above. In the book Ackerman is quoted as saying “There was no training in medical ethics at the time [of the 1950s and 1960s]. “No one ever brought up the Nuremberg Code.” (p. 62)

Nuremberg was seemingly throttled in the U.S. almost at its birth. You cover this in the book, but I wonder if you have anything you wish to add, as columnists and even ethics classes still mention it, but rarely ever mention how it was ignored.

Jeff Kaye October 13th, 2013 at 2:40 pm

Do you think this project will foster further book-length projects from you?

Allen M. Hornblum October 13th, 2013 at 2:41 pm
In response to masaccio @ 77

IRBs do a reasonable job, but in many cases they are controlled by one or two key people who have interest in getting (research) done. Many do a lousy job of protecting vulnerable populations.

Jeff Kaye October 13th, 2013 at 2:41 pm

So, Allen, are you pleased with the response to your book thus far?

Gregory J. Dober October 13th, 2013 at 2:42 pm
In response to Jeff Kaye @ 78

People see it as the code for those “other” folks. There is denial that it happens here or we would even think about it.

Allen M. Hornblum October 13th, 2013 at 2:42 pm

No, the reaction was a bit lame compared to Acres of Skin. I’d be curious what FDL audience thinks the reason is? Why would infants & children be of less interest and concern than prisoners?

Gregory J. Dober October 13th, 2013 at 2:43 pm

See the current SUPPORT study on premature babies that was problematic the past few years. IRB’s miss it and there is conflicts. Many IRB members are affiliated with the organization and do not want to be responsible for millions in funding going elsewhere. It still has its problems.

Judith L. Newman October 13th, 2013 at 2:43 pm
In response to masaccio @ 77

We suspect that fully functioning IRB’s are grabbing most of the studies proposing to do unethical actions and forcing them to revise their procedures before approval but if you go onto Vera Sharav’s website mentioned above, you will see that studies that are harmful seem to still get approval (if we assume the authors submitted the same procedures they then employ. Vera implies this is more likely to occur in the future under some of the policy changes she points to in the affordable health care policy. And we suspect that IRB’s in other parts of the world are weak and thus we have grave concerns about the research being conducted offshore by American docs and pharmaceutical companies.

Allen M. Hornblum October 13th, 2013 at 2:44 pm

Judy is more optimistic than I am about whistle blowers. They tend to be few and far apart in terms of incidents and years.

Jeff Kaye October 13th, 2013 at 2:45 pm

So, I’m interested, (question for all here): Do you think practices around experiments and ethics are getting better or worse? I think that’s sort of what massaccio was also asking above.

Gregory J. Dober October 13th, 2013 at 2:46 pm

Another interesting note: The U.S is no longer a signatory to the revised Declaration of Helsinki. It was too restrictive for overseas research. They replaced it with the term/procedures, “good clinical practices”.

Jeff Kaye October 13th, 2013 at 2:46 pm

Can you give an example of such changes related to the Affordable Care Act? esp. since so much in the news now anyway.

Allen M. Hornblum October 13th, 2013 at 2:46 pm
In response to Jeff Kaye @ 87

Research is more ethical and observed now than a half-century ago, but gaps and indiscretions still take place. It’s an evolutionary process.

BevW October 13th, 2013 at 2:47 pm

When was that change made? Who pushed it?

Jeff Kaye October 13th, 2013 at 2:48 pm

Wow. Another amazing fact of which I was ignorant. Is this something that has been written about? So much seems to happen that just flies under the radar because it’s never reported or even noted in academic journals.

Judith L. Newman October 13th, 2013 at 2:48 pm
In response to Jeff Kaye @ 79

I too am surprised by the low level of media attention for this book. As to whether this project has me thinking of working on other books, I am currently drafting a book that reviews research on children’s concepts of physical, “mental”, and neurobehavioral illnesses in the hopes that we can do a better job of explaining illness to the diagnosed child, their siblings, and their peers …and that the child’s self esteem, family and peer relations can be improved. My own research focus is on children with Tourette’s ADHD, and OCD.

Gregory J. Dober October 13th, 2013 at 2:49 pm
In response to Jeff Kaye @ 87

In the US, we are more cautious though not perfect. IRB conflicts are a problem as well as CMO’s. CMO’s (contract management organizations) are now on Wall Street and they run a pharmas experiment from start to finish including recruiting volunteers. Make a distinction of government funded and private funded. Private funded, in theory, could do the same experiments in our book without criminal problems. My concern is the off shore studies as well.

BrandonJ October 13th, 2013 at 2:50 pm

Have you ever had students come up to you about ethics or your research?

Jeff Kaye October 13th, 2013 at 2:51 pm

I can tell you that when I tried to teach some of this kind of material in a course on History and Systems of Psychology (not ethics, which was not taught to PhD students as a full class back in my APA-accredited school in the early 1990s), the students were actually not only clueless, but hostile. “Why are you teaching us this?” they said. “What do you intend us to do about it”. I answered, “I intend for you not to do these same things.”

Gregory J. Dober October 13th, 2013 at 2:51 pm
In response to Jeff Kaye @ 92

I believe it was the 5th revision in 2000 that the US departed.

Judith L. Newman October 13th, 2013 at 2:53 pm
In response to Jeff Kaye @ 89

Vera Sharav made reference to an issue in the new health policy that has to do with standard of care. She spoke of the SUPPORT nationally funded research study with premies as an example when she was a guest as a panelist on my campus with Allen and me 2 weeks ago. She suggested that informed consent from parents may in the future be sought AFTER procedures are conducted and the parents THEN get to choose whether their child’s data is or is not included. She also implied that rather than targeted care for a child, there can be a random assignment to treatment groups that is anything but tailored to their needs.

Jeff Kaye October 13th, 2013 at 2:53 pm

Allen, What for you was the most important message coming out of this book? (I see this was sent as a reply to Judith, so really the question is for all three of you)

Gregory J. Dober October 13th, 2013 at 2:53 pm
In response to Jeff Kaye @ 96

Hopefully learn from the mistakes of others. Unfortunately, in research that seems to be asking for a miracle.

stevelaudig October 13th, 2013 at 2:54 pm

“War” is used to justify anything, everything, and all things…. vile.

Allen M. Hornblum October 13th, 2013 at 2:54 pm
In response to Jeff Kaye @ 99

Stay vigilant & remain skeptical. Don’t buy anything someone is selling you.

Judith L. Newman October 13th, 2013 at 2:56 pm
In response to BrandonJ @ 95

Brandon- my students MUST discuss this as it comes up in my child development courses as well as the ethics course and I never lose an opportunity to make it relevant to their internships or agency positions as many of them are working therapeutically with children even before getting their bachelor’s degree. Plus in the mental health field, the only way someone can maintain their license is to get continuing education credits in ethics every 2 years but this is for practitioners/therapists.

Jeff Kaye October 13th, 2013 at 2:57 pm

For readers, interested in the SUPPORT preemie research controversies, here’s a few links on recent news on the general subject:

HHS Charged with Bungling Preemie Study

And at NPR, Another Study Of Preemies Blasted Over Ethical Concerns

Jeff Kaye October 13th, 2013 at 2:58 pm

Regarding the every 2 years ethics requirement, it is for clinical psychologists only. Research psychologists are not, I believe, usually licensed. Also, I never have heard about past abuses such as discussed here in any ethics class or workshop in 20 years, conducted by many different people and institutions.

Judith L. Newman October 13th, 2013 at 2:59 pm
In response to Jeff Kaye @ 99

So as my co-authors have implied, the message of the book is that in order not to repeat the hypocrisy of the past, we must be vigilant-we cannot ignore injustice and we must DO SOMETHING whenever we suspect such injustice and thus we must deal with the often negative consequences for whistleblowing …or not.

Gregory J. Dober October 13th, 2013 at 3:00 pm

One other past experiment that your readers may be interested. There were trials for a synthetic blood replacement called Polyheme made by Northfield labs in the mid-2000′s. What made this dangerous was that they used it in ER situations to test if it was as good as real blood. So, you could not give consent. Also, they used hospitals in urban areas with high crime. The substance caused strokes and heart attacks. So, it will happen again.

Jeff Kaye October 13th, 2013 at 3:00 pm

Some crucial changes made in human subjects regulations made at that time, including in the military.

Allen M. Hornblum October 13th, 2013 at 3:00 pm

Academic institutions and universities seem to refrain from delivering bad news about the system. Bad for business.

Judith L. Newman October 13th, 2013 at 3:02 pm
In response to Jeff Kaye @ 104

Well there is no separate license for research psychologists but all of our ethics codes in any psychology-related professional organization include research-related issues- even issues of not fabricating or fudging data as did Andrew Wakefield in his 1998 autism-MMR vaccine false linkage that has and is having such devastating effects.

Jeff Kaye October 13th, 2013 at 3:03 pm

Here’s a link for readers, looking back to a 2006 article and how one news site looked at the issue when the controversy over the Polyheme “ethical snag” arose.

Ethicists, researchers scrutinize PolyHeme trials

Jeff Kaye October 13th, 2013 at 3:05 pm

Yes, the Andrew Wakefield autism-vaccination studies are discussed in a chapter of Against Their Will, in case readers here didn’t know it.

If you haven’t yet purchased the book, here’s one link to do so.

Judith L. Newman October 13th, 2013 at 3:05 pm
In response to BrandonJ @ 95

A further reply to Brandon about students being interested in this topic:I think the students in my courses are always engaged by this information and I hope it effects their perspective going forward as they read, think about, or even conduct research with human participants- notice I do not even use the term human “subjects” as I find the term so suggestive of exploitation. It was interesting about 2 weeks ago when Allen and I brought some of the victims of research abuses onto my campus to speak. The students in the audience became quite emotional even though some had only come because their instructors offered extra credit but if you lead them to the important and relevant material, change can happen.

Jeff Kaye October 13th, 2013 at 3:06 pm

For Greg and Judith – Has your research shaken your faith in the good intentions of the medical-industrial complex?

Allen, I don’t ask you, because I suspect your faith has already hit rock-bottom, but feel free to chime in if you wish to.

Allen M. Hornblum October 13th, 2013 at 3:08 pm
In response to Jeff Kaye @ 114

Yes, I am of little faith. Hence, I try to keep an eye on things and appreciate peole like Vera Sharav do to keep the rest of us informed.

Gregory J. Dober October 13th, 2013 at 3:09 pm

Since I primarily deal with ICU docs, I see the hard work and dedication and many times the relevant cures that the pharmaceutical companies give to us. However, I would never volunteer for a study. The big thing now is Phase I cancer studies for stage 4 cancer patients. These people still see hope when the trial is not for a cure but side effects. That depresses me when I try to talk someone to carefully consider that type of study.

Jeff Kaye October 13th, 2013 at 3:09 pm

Allen, what was it like working with co-authors? I think you did that once before, with Harriet Washington, on Sentenced to Science.

Jeff Kaye October 13th, 2013 at 3:10 pm

For readers who are interested, here’s a link to “Human Experiments: A Chronology of Human Research”
by Vera Hassner Sharav

Judith L. Newman October 13th, 2013 at 3:10 pm
In response to Jeff Kaye @ 114

Quite simply and quite frankly- yes I do think my faith was shaken a bit but I also think of the psychology behind some of this and understand how it can occur so if I can recommend one of my most important reading experiences ever as it countered all that I had believed, I suggest Philip Zimbardo’s The Lucifer Effect- especially the last chapter that suggests how to minimize the likelihood that good people will do evil things and clearly the humanizing of the “other” is rule number one.

Gregory J. Dober October 13th, 2013 at 3:10 pm
In response to Jeff Kaye @ 117

Please lie Allen!

Allen M. Hornblum October 13th, 2013 at 3:11 pm
In response to Jeff Kaye @ 117

It was less problematic than I thought it would be. We were committed to the project and tried to collectively pursue the best product we could.

Gregory J. Dober October 13th, 2013 at 3:11 pm

Thanks.

Jeff Kaye October 13th, 2013 at 3:12 pm

Gregory, except for engaging in unethical experimentation (ahem), what solutions would you propose for the problem regarding the shortage of volunteers?

Jeff Kaye October 13th, 2013 at 3:12 pm

You’ll note, I saved this question for the latter part of the Book Salon!

Gregory J. Dober October 13th, 2013 at 3:13 pm

I’m for professional volunteers that are truly informed. Skateboarding has become an occupation, so I have no problems in professional truly informed participants. My advice would be to join a union.

Jane Hamsher October 13th, 2013 at 3:13 pm

Thanks so much Judith. That looks like a fantastic resource and a great place to start.

Jeff Kaye October 13th, 2013 at 3:13 pm

I can tell you the result is superb. The depth of research, even if a lot didn’t make the final publisher cut, is evident in the book, which is chock-packed with examples. It can even be somewhat overwhelming to read.

I wonder if any of you think it is the overwhelming nature of what is reported here that tends to cause people to look away.

Jeff Kaye October 13th, 2013 at 3:15 pm

Surely the humanizing of the “Other” is crucial. Over and over social and psychological research shows this is a determinative cause of abuse, at least on a large social scale, as with war and genocide.

Gregory J. Dober October 13th, 2013 at 3:15 pm

I can’t answer that objectively or you will hear a rant about the popularity of the Kardashians.

Judith L. Newman October 13th, 2013 at 3:15 pm

Books like ours will probably not increase the volunteer pool. We are not anti-research however- or at least I am not. I just want to see informed consent or assent based on an honest depiction of risks. I want all populations to be equally likely to be included in the sample (i.e., to not discriminate and choose the most vulnerable of populations). Part of the problem is that tenure, promotions, grants, are often based on churning out the data and this can lead to an emphasis on quantity and a de-emphasis on quality thus the taking of ethical shortcuts.

Jane Hamsher October 13th, 2013 at 3:16 pm

That sounds like a truly interesting and outside-the-box solution.

Jeff Kaye October 13th, 2013 at 3:16 pm

Do you mean something like the Seventh Day Adventist researcher subjects during WWII?

Allen M. Hornblum October 13th, 2013 at 3:16 pm
In response to Jeff Kaye @ 123

That’s very good question. However, people will always volunteer, especially if there was a legitamite public campaign to educate and encourage people to participate in scientific endeavors. Unfortunately, the dangerous and deadly research projects that garner media attention inhibit participation and faith in the system.

BrandonJ October 13th, 2013 at 3:18 pm

Thank you for your response. I took a Psych course in college and hadn’t really been taught ethics with Psychology. To be honest, I don’t really think ethics is really extensively taught in the Psych department (though I could be wrong), so to see this really opens my eyes to new thoughts.

I agree with you, with material that can open eyes, change does occur.

Gregory J. Dober October 13th, 2013 at 3:18 pm
In response to Jeff Kaye @ 132

I guess everyone else makes money off of research so why not professional volunteers. yes.

Jeff Kaye October 13th, 2013 at 3:18 pm

It’s often a popular thing to approach controversies in society and say (after Woodward and Bernstein’s famous phrase), “Follow the money”.

To which main players does the money trail go when you look at this research? Universities, pharmaceutical companies, the pockets of the doctors. Where really does the reform need to focus?

Gregory J. Dober October 13th, 2013 at 3:19 pm

I agree, altruism will have its place too. We see it in blood drives etc.

Jeff Kaye October 13th, 2013 at 3:19 pm

Do you think there is some research that just shouldn’t be done?

Allen M. Hornblum October 13th, 2013 at 3:20 pm
In response to BrandonJ @ 134

Ethics courses are the bastard child of the university and med school curriculum. Some institutions don’t even have an ethics sections in their school book stores.

DWBartoo October 13th, 2013 at 3:20 pm
In response to Jeff Kaye @ 81

Jeff, thank you and your guests for these very important revelations of long-term abuse and indifference.

You ask about the book’s reception and I note that not only is the reception in the range of “lukewarm”, but also it is downplayed by some reviewers as, for example, the Kirkus reviews, who call it “overwritten”.

My sense is that society but especially the professional disciplines involved are more embarrassed than ashamed.

Apparently “exceptionalism” goes much, much further than foreign “policy”.

DW

Judith L. Newman October 13th, 2013 at 3:20 pm
In response to Jeff Kaye @ 127

It may be that the overwhelming nature of this book- even in its shortened version causes people to look away. Allen at least pushed the importance of setting the context of the research and not just doing a catalogue of thousands of studies but even with that, it can get disturbing and painful. But we can hardly care that a reader may be a bit uncomfortable when these kids endured what they did. Watching Fernald victim Gordon Shattuck tell his story 2 weeks ago and seeing the pain in his face and the tears he shed and the tremors of his body brings home the point that our pain is trivial.

Allen M. Hornblum October 13th, 2013 at 3:21 pm
In response to Jeff Kaye @ 138

Obviously. The current anthrax studies on children should not be done.

Gregory J. Dober October 13th, 2013 at 3:22 pm
In response to Jeff Kaye @ 136

It’s a matter of degree. What is large for some may be small to others. But, start with the pharma’s. They note R and D is high so costs are high. But Pfizer spent 4 billion dollars in marketing Viagra in its infancy. University’s are fighting for funds today. So, the IRB is stressed. The docs, in my opinion are probably the bottom feeders and get very littel of the pie. Though they do get some.

Jeff Kaye October 13th, 2013 at 3:22 pm

I think if we can get to a point where truly informed consent is always practices, that would be huge. But is it an unattainable goal, i.e. to implement Nuremberg? I realize that some populations are quite vulnerable when it comes to giving informed consent, and I’d list of course children, prisoners, those who are hospitalized or already ill, the elderly, the mentally ill.

Gregory J. Dober October 13th, 2013 at 3:22 pm

Ditto

Jeff Kaye October 13th, 2013 at 3:24 pm
In response to DWBartoo @ 140

All good points, but ““overwritten”? really? It almost sounds like an invitation to look away. That often happens in subjects such as this, where it’s assumed the researchers are being sensationalistic. It’s a way to invalidate the entire message. Like branding those who exposed MKULTRA as conspiracy theorists.

Jeff Kaye October 13th, 2013 at 3:25 pm

But they are going forward under the decision of Obama’s appointed bioethics committee, yes?

Judith L. Newman October 13th, 2013 at 3:26 pm
In response to Jeff Kaye @ 138

As to research that shouldn’t be done, let me return to those ethical principles which should guide all research (a deontological justification vs teleological). If the principles are violated- I say don’t do it but the IRB’s use beneficence or promoting good to sometimes mean the public good and if the benefits (to whom?) outweigh the risks (to whom) than they will approve. They often, as you likely know, allow social psychologists to “lie” as long as they debrief afterwards and explain why this was necessary. Although this is unlikely to get approval with children these days, I question why any researcher thinks they have the right to lie just to set up a particular “situation”. No one research study is all that important- believe me!

Gregory J. Dober October 13th, 2013 at 3:26 pm
In response to Jeff Kaye @ 147

The committee that is headed by a UPenn person. Like having the fox guard the henhouse.

Allen M. Hornblum October 13th, 2013 at 3:26 pm
In response to Jeff Kaye @ 146

It’s not always easy to pass over obviously egregious and vile experiments on three day old infants and not make a comment.

Allen M. Hornblum October 13th, 2013 at 3:27 pm

Dober, that was a Very appropriate analogy.

Jeff Kaye October 13th, 2013 at 3:27 pm

Oddly, I do think these things are in the public’s consciousness, and emerges in pop culture, as in the Harrison Ford version of The Fugitive some years ago, where [spoiler alert] the villain was a researcher trying to hide the fatal unethical results of experiments so he could market his medical device.

DWBartoo October 13th, 2013 at 3:28 pm
In response to Jeff Kaye @ 146

Exactly, Jeff, and I consider this is also why language is deliberately more and more euphemistic … the point and intent of such “praise” as “overwritten” is to belittle … and direct attention away …

DW

Allen M. Hornblum October 13th, 2013 at 3:28 pm

Someone from Penn should be the last person to head a bioethics committee.

Jeff Kaye October 13th, 2013 at 3:30 pm

Hard not to maintain the charade of being the objective, impartial researcher, eh? The observer totally removed from his or her subjects? Come to think of it, that is the model for scientific and medical experimentation, isn’t it?

Perhaps the critique goes even deeper, into the whole scientific enterprise that empowers the researcher or research establishment and totally alienates the subject, who, as Ted and all of you pointed out, comes from the disenfranchised and powerless.

Jeff Kaye October 13th, 2013 at 3:32 pm

They often, as you likely know, allow social psychologists to “lie” as long as they debrief afterwards and explain why this was necessary.

Isn’t this what happened to Theodore Kaczynski, as you cover in Against Their Will? The psychologist in charge, Henry Murray, is still taught to be a giant in History of Psychology classes, just as Bender’s reputation still persists.

Jeff Kaye October 13th, 2013 at 3:33 pm

As we go into this last half-hour, let’s get more down and dirty…

I wonder if you all believe your publisher had the same vision of the book as you did?

Allen M. Hornblum October 13th, 2013 at 3:33 pm
In response to Jeff Kaye @ 155

The medical research system is terribly imbalanced. The smartest and best trained of society using usually the weakest and least informed. Regrettably, the general public doesn’t seem to care. As long as the docs find cures to deceases and other maladies that impact the public. It’s a very utilitarian system.

Judith L. Newman October 13th, 2013 at 3:34 pm
In response to Jeff Kaye @ 152

We may be forgetting that in some ways these research abuses were the least of these kid’s problems as they were being physically abused in many institutions, sexually abused (Gordon speaks of daily rapings), and they were doing slave labor, not getting schooled, and eating less than fully adequate diets in many cases so we are only surprised about the research aspect because docs were conducting the studies but docs were the superintendents of many of these institutions or docs had to know of the horrific conditions. The research was just part and parcel of the overall negative treatment. We focused on this piece but it is just a piece after all.

Gregory J. Dober October 13th, 2013 at 3:34 pm

There was so much heart and soul into the book by the three of us and we wanted the whole story to be told our way that I became defensive on editor changes. I felt it was like Art Magazine telling Da Vinci how to paint the Mona Lisa. Let’s put it this way, I am probably black listed as an author to work with at the publishing houses, even if it would be Pulitzer material!

Jeff Kaye October 13th, 2013 at 3:34 pm
In response to DWBartoo @ 153

Thanks, btw, DW, for stopping by. Your contributions, and those of other readers are always appreciated. If any of you out there are still lurking, remember, no question is too “dumb” or unimportant, and you have these three great guests to answer your questions.

DWBartoo October 13th, 2013 at 3:35 pm
In response to Jeff Kaye @ 155

How many, who have the privilege of receiving the “best” education, in a number of professions are, increasingly, at a great remove from the many, but especially from those beneath the common notice of society?

I consider this to be a social issue that well ought to receive very serious attention, yet that attention will not come from most centers of learning as they as far too much invested in doing well than doing good.

DW

Allen M. Hornblum October 13th, 2013 at 3:35 pm
In response to Jeff Kaye @ 156

All of these doctors – Salk, Krugman, Murray, Kligman – were giants and usually revered by their compatriots. However, they did a lot of damage to many throughout society.

Judith L. Newman October 13th, 2013 at 3:37 pm
In response to Jeff Kaye @ 156

We chose to refer to the Henry Murray research in our Psychological Abuse chapter and even though he taught at Harvard to adults, his most famous student was only 17 upon admission and the issue of whether this disturbed young man would have ever gone so far as to become the Unabomber without this particular gruesome research carried out for years by an authority figure at the institution, is anyone’s guess.

Gregory J. Dober October 13th, 2013 at 3:38 pm

Thats whats fascinating. We touched leaders in many fields. Our intent was not to show one rogue researcher in a remote part of the country but that it was so common that it was standard protocol for most.

Jeff Kaye October 13th, 2013 at 3:39 pm

Thanks, Judith, and that’s a very, very important point, and that does come through in the book. It would seem the terrible abuse of children by the system is what allowed for the later abuse when the researchers descended. But again, where were the doctors when the abuse was initially happening. In charge. Aloof. Corrupted.

Reminds me of the recent headlines over use of shock treatment on children at Boston-area’s Judge Rotenberg Center.

Allen M. Hornblum October 13th, 2013 at 3:39 pm

Yes, it was the dominant culture of the entire profession.

Ted Chabasinski October 13th, 2013 at 3:39 pm

Maybe the “lukewarm” response is because the book brings in issues that no one is willing to look at. It’s almost a catalog of so many of the groups that society refuses to respect. To accept the thesis of this book,one has to admit a lot of one’s prejudices. Admitting to oneself that those prejudices lead to what amounts to Nazi practices is too much for someone with a weak (or non-existent) conscience.

BrandonJ October 13th, 2013 at 3:40 pm

Did any person you interviewed refuse to do one or immediately denounced the book when it came out?

Gregory J. Dober October 13th, 2013 at 3:41 pm
In response to BrandonJ @ 169

None that I am aware.

Jeff Kaye October 13th, 2013 at 3:41 pm

I don’t think you have to be a psychologist to realize TK was terribly damaged by this research, and was a vulnerable person when he entered the university. In fact, universities are not unaware of that kind of vulnerability, and build student counseling centers (like UC Berkeley’s Tang Center) precisely because they know about that kind of need among young people.

Allen M. Hornblum October 13th, 2013 at 3:42 pm
In response to BrandonJ @ 169

All of the former test subjects we interviewed greatly appreciated such a book was being written. It finally gave them voice. Ask Ted if you don’t believe me.

Jeff Kaye October 13th, 2013 at 3:43 pm

Hopefully, there’s still some time for questions here:

For each of you (and I’m so grateful to all your time and thoughtfulness expended here today), if you were to pursue additional ethical issues and questions in medical research what would they be?

Ted Chabasinski October 13th, 2013 at 3:43 pm

Yes, I really appreciated this book.

Gregory J. Dober October 13th, 2013 at 3:44 pm

BTW…Ted’s story probably elicits the most comments to me from people that read the book.

DWBartoo October 13th, 2013 at 3:45 pm
In response to Jeff Kaye @ 161

To be honest, Jeff, I am rather out of my depth, I’m appalled, quite frankly, and consider your guests to be both very brave, personally, and best example, in a time in dire need of such example. I think civil society is under major and unrelenting assault and that, as more and more revelations of, essentially, inhumanity or callousness, reach the light of day, that many citizens are just as overwhelmed as many too ivory-tower practitioners appear to be thoroughly underwhelmed and doubling down …

I lurk happily and thoroughly appreciate the education I am receiving this evening. An absolutely great Book Salon and a subject that speaks to the heart of banality and indifference.

DW

Jeff Kaye October 13th, 2013 at 3:45 pm

I think such revelations amount to a paradigm shift in one’s view of the society they live in. I know it did for me (earlier, when I realized the long torture history, and participation by members of my field… the knowledge of research violations and crimes on children and prisoners in general came later… largely by reading Allen).

Judith L. Newman October 13th, 2013 at 3:45 pm

Since Ted mentions Nazi practices, it is interesting to recall that ALL of these studies were published in respectable journal except the one that is now called The Monster Study and the reason that Dr. Wendell Johnson did not publish this study creating stuttering in children housed in an orphanage by criticizing their every utterance for years on end is that some of his graduate students pointed out that the Nuremberg Trials were going on at the same time and therefore it may not be a good idea to publish such data!

Gregory J. Dober October 13th, 2013 at 3:47 pm
In response to Jeff Kaye @ 173

I’m starting to look at more neuroscience research. Results of MRI’s may determine criminal guilt or innocence someday. There is a ton of stuff going on in neuroscience imaging research. So, thats starting to hit my radar.

Allen M. Hornblum October 13th, 2013 at 3:47 pm
In response to Jeff Kaye @ 173

Some expose of pharmaceutical decision making would be illuminating as well as a profile of a test subject who was used and abused by the system. Both would hopefully capture media attention; that is the only way to reach the general public.

Jeff Kaye October 13th, 2013 at 3:48 pm

If readers are wondering what to do or where to start on all the issues brought up here today, I think it’s clearly been said one needs to be informed. The best place to start is with Allen, Judity and Gregory’s own book.

Against Their Will: The Secret History of Medical Experimentation on Children in Cold War America. Buy it. Read it. Tell others about it. Only when the silence is broken will things really begin to change.

BrandonJ October 13th, 2013 at 3:50 pm

Great to hear. I should have clarified the doctors and researchers who led the studies.

My question is, since this entire discussion is opening me up to this topic, is where should someone who has never heard of such practices begin (aside from the book)?

Allen M. Hornblum October 13th, 2013 at 3:50 pm
In response to Jeff Kaye @ 181

Jeff, thanks for the plug. I’m waiting for your next book to tackle one of these issues.

Jeff Kaye October 13th, 2013 at 3:50 pm

That is fascinating stuff. Can be scary, too. If you didn’t see it, I did a Book Salon at FDL with Jonathan Moreno a little over a year ago. We were discussing his book, Mind Wars: Brain Science and the Military in the 21st Century. Here’s the link: http://fdlbooksalon.com/2012/09/23/fdl-book-salon-welcomes-jonathan-d-moreno/

BevW October 13th, 2013 at 3:51 pm

As we come to the last minutes of this great Book Salon discussion,

Allen, Judith, Greg, Thank you for stopping by the Lake and spending the afternoon with us discussing your new book.

Ted Chabasinski, Thank you for being here today.

Jeff, Thank you very much for Hosting this great Book Salon.

Everyone, if you would like more information:

Allen’s website and books (Hornblum.com)

Judith’s website

Greg’s website

Thanks all, Have a great week. If you would like to contact the FDL Book Salon: FiredoglakeBookSalon@gmail.com

Jeff Kaye October 13th, 2013 at 3:51 pm

Next book? How about a first book?

Judith L. Newman October 13th, 2013 at 3:51 pm

One of the reactions that I noticed at our panel presentation about the book is the audience was either grateful they had NOT sent a family member to an institution back in the 40′s to 60′s or worried that they HAD! This may be another reason for the turning away as many families, including mine, were told that it would be good for the family if the challenged child went to an institution. The thought that those “children” may have become human guinea pigs may truly be too much for parents/sibling to bear.

Gregory J. Dober October 13th, 2013 at 3:52 pm
In response to BrandonJ @ 182

Brandon, this is in general. But I think most of us that has followed this field have cut our teeth on the Tuskegee experiments from the 30′s to the 70′s.

Allen M. Hornblum October 13th, 2013 at 3:52 pm
In response to BrandonJ @ 182

I’d suggest a novice start with a few good books on medical ethics and the history of using vulnerable populations as cheap and available guinea. Then check out government and university websites that deal with medical research and see what they are up to. You’ll be quite shocked.

Gregory J. Dober October 13th, 2013 at 3:53 pm

Thank you Bev, jeff and FDL…have a great evening.

Jeff Kaye October 13th, 2013 at 3:53 pm

That would be great. I know there must have been some exposes of Big Pharm, but I’m not aware of any that concentrate on the experience of the clinical trials subjects.

Allen M. Hornblum October 13th, 2013 at 3:53 pm
In response to Jeff Kaye @ 186

I’ll buy it.

Judith L. Newman October 13th, 2013 at 3:54 pm

I would pick up a basic text on research ethics to understand the issues first and then understand the violations and/or honorings of the principles when you read research studies.

Jeff Kaye October 13th, 2013 at 3:55 pm

Thanks, Greg, very much.

And thanks to Judith and Allen. This has been a stimulating experience for me and I hope readers as well.

Thanks, Ted, for being here, to Jane for her participation, and to all FDL readers.

Much thanks, as always, must go to Bev for really putting this all together.

Jeff Kaye October 13th, 2013 at 3:55 pm

Thanks!

Allen M. Hornblum October 13th, 2013 at 3:55 pm
In response to Jeff Kaye @ 191

Just wanna thank, Bev, Jeff, and Firedog for their interest in public welfare and educating the public about issues of importance.

Judith L. Newman October 13th, 2013 at 3:56 pm

Ditto.

Jeff Kaye October 13th, 2013 at 3:57 pm

A bit of a specialist work, and somewhat expensive, but I’d like to note ATW’s publisher, Palgrave Macmillan, also published in 2004 Paul Julian Weindling’s book, Nazi Medicine and the Nuremberg Trials: From Medical War Crimes to Informed Consent.. I’m reading it now and find it incredibly interesting.

Allen M. Hornblum October 13th, 2013 at 3:59 pm
In response to Jeff Kaye @ 198

Yes, it’s a fine book, but the more one reads the more one begins to believe Nuremberg was a show trial. The US dropped the ball too many other places to believe we were really that concerned about research ethics around the world as well as at home.

Allen M. Hornblum October 13th, 2013 at 4:00 pm

To all, thanks, and Good Night.

BrandonJ October 13th, 2013 at 4:02 pm

Thanks to Jeff for hosting this, the authors for responding to questions and everyone else in this discussion. It’s definitely interested me in this subject, I greatly appreciate it.

Jeff Kaye October 13th, 2013 at 4:04 pm
In response to BrandonJ @ 201

Thanks, Brandon, and also for your great questions as well!

CTuttle October 13th, 2013 at 4:05 pm

Mahalo Nui Loa, Jeff, Judith, Allen, Greg, Bev, and all for this excellent Book Salon…!

Elliott October 13th, 2013 at 4:08 pm

Thank you all so much, and good luck with the book

and thanks Jeff & Bev!

BrandonJ October 13th, 2013 at 4:10 pm
In response to Jeff Kaye @ 202

I appreciate it. I love learning new material, especially one that moves me as strong as this.

karenjj2 October 13th, 2013 at 5:10 pm

two articles that i found illuminating that touch on some of the discussion today:

http://www.motherjones.com/environment/2010/09/dan-markingson-drug-trial-astrazeneca?page=2

http://www.motherjones.com/environment/2010/09/clinical-trials-contact-research-organizations

my sincere thanks to the authors in their illuminating work on behalf of the voiceless.

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