From 1946-1948, a team of medical researchers in the United States Public Health Service intentionally infected more than 1,300 Guatemalan prison inmates, psychiatric patients, commercial sex workers and soldiers with sexually transmitted diseases. The team also used children in diagnostic testing. Done completely without consent, their experiments resulted in a living hell for many of their subjects.
Yesterday, the Presidential Commission for the Study of Bioethical Issues delivered a report to President Obama that details this shameful chapter in American medical history.
The commission concludes that those involved in this research violated the ethical standards not only of our time but also of theirs. As is evident by their own internal communications -- and the fact that just a few years earlier they obtained the informed consent of prisoners in Terre Haute, Indiana before conducting experiments there -- these doctors also were morally culpable: they knew there was a moral requirement to obtain informed consent. But they chose not to ask for it in Guatemala. And they went to great lengths to keep their experiments as secret as possible while still obtaining funding from higher-level authorities who should have disapproved the experiments.
Why should we today care about ill conceived experiments that took place some 60 years ago? First, by shining light on this dark chapter of our history, we honor the victims. We acknowledge that American doctors denied Guatemalans the respect they deserved as fellow human beings and violated their most basic human rights.
Second, we need to learn essential practical as well as ethical lessons from the Guatemalan experiments so that nothing like this happens again. The United States now has many more rules and regulations governing medical experiments on human subjects than it had in the 1940s and 50s. But can we be confident that all researchers actually recognize the implications of these rules when they conduct their experiments at home and abroad?
The doctors and their superiors who approved the Guatemalan experiments obtained the informed consent of human subjects in the Indiana prison, but they applied a double standard when they left the country and shielded themselves from critical scrutiny. Yet every ethical principle that applies to how American researchers treat human subjects in this country also governs how they should treat human subjects everywhere. The first sentence of the Nuremberg Code, written in 1947 in the wake of medical experiments conducted by Nazi doctors, could not have been clearer in stating that "the voluntary consent of the human subject is absolutely essential."
Informed consent is necessary but not enough. Sound scientific research demands that, even with informed consent, researchers not inflict harms disproportionate to prospective benefits. In Guatemala, doctors inoculated people with sexually transmitted diseases before completing the diagnostic experiments needed to determine the actual effects of the inoculations. Research design and record keeping were haphazard at best. When in April 1947, a doctor publicly noted (in the New York Times) that "to shoot living syphilis germs into human bodies" is "ethically impossible," doctors responsible for the Guatemalan experiments took note and worked to ensure the secrecy that they needed to do the ethically impossible.
This was both bad science and egregious ethics. Today it would be much harder to shield such activities from broader scrutiny. Yet it takes only one egregious violation of ethical standards in experimentation to deter many people from volunteering for medical research that offers the best hope for path-breaking therapeutic discoveries. To fully face up to the travesty inflicted on so many individuals in the name of medical science, we first must take the overarching lesson of Guatemala to heart and then thoroughly consider what could be happening today that future generations will look back to with similar shame.
The overarching lesson of the Guatemala experiments is never to confuse rules that apply ethical principles to research with burdensome obstacles to be evaded. An important corollary is that regulations, which have proliferated over the decades, need clear -- and clearly communicated -- ethical purpose. Regulations that lack a compelling purpose invite the very disrespect for rules -- and ultimately for vulnerable individuals -- that medical ethics is intended to protect against.
These lessons are sobering calls to further action for all of us who care about the progress of science and the protection of human subjects, and also on occasion complain about burdensome government regulations. The Commission is now turning its full attention to recommending any steps needed to ensure that such ethically impossible treatment of our fellow human beings is never again repeated.
Blanche Lincoln: Avoid Extremes to Solve Our Nation's Problems
Guatemala syphilis experiments in 1940s called "chillingly ...
BBC News - US scientists 'knew Guatemala syphilis tests unethical'
U.S. researchers broke rules in Guatemala syphilis study | Reuters
Guatemala Syphilis Experiments Shock, But U.S. Drug Trials Still ...
U.S. broke rules in Guatemala syphilis study - Health - Health care ...
U.S. Guatemala Syphilis Tests: Attorneys Seek Lawsuit For ...
A parallel child suffocation experiment was run recently without parental consent and killed 23 "extra" babies, with the active participation of Emory University which is headed by that Commission's Vice Chair. This is the type of cruel and unscientific experiment that future generations will look back to with great shame because the present generation of alleged watchdogs does nothing to stop them.
See this documented in my letter to Professor Wagner, Vice.Chair of the Bioethics Commission, at http://retinopathyofprematurity.org/bioethicsownviolations.htm.
I read your essay with interest. But then I read nine comments. Readers seem unimpressed and even suggest you are part of the problem.
Is there a website I can go to to read the data (names of researches, etc.) upon which you based your report?
On the one hand, you say in print, "No researcher today should do 'X.' I ask why? You say, "Because 'X' causes harm." I ask, how do you know 'X' causes harm? You say, "Because American researchers in the past did 'X' and harm did result." I ask, where is your evidence? You say, "I will not tell you. Trust me."
The lesson to any researcher today is - Do not get caught - Pursue the imagined benefits of your research. As long as you do not get caught red handed, you will have no worries. Dr. Gutmann will never tell when she finally does stumble onto the information. (I am trying to make a point - Not put words in your mouth.)
We Americans have a crisis of trust in all our institutions. And I believe there is a solution. See my essay, "Reform Congress - Save ourselves." http://www.huffingtonpost.com/daniel-hough-jones/reform-congress-save-ours_b_959207.html
I would like your opinion on my proposal for building trust because if we fail at that, all the essays in the world will be inadequate.
Sincerely,
Daniel Hough Jones
More then a generation of the "information age" has not brought the often promised educated and enlightened society but instead, as human morality remains stuck in neutral, instant news and info that only keeps reinforcing mankind's "heart of darkness" more quickly and more often.
In school history books that scores of Americans grew up with it was always projected, if not stated outright, that the ignorance and biggorty of the past was the result of, not the human heart, but lack of education and flow of reliable information.
So what's the excuse for the last decade in this country?
You touch on a number of good points. For example, obviously for 50,000 years, human beings have been very well educated for their environment or else we would not be here.
Now, today - and this is your point - our education (students and adults) is not so effective. Please read my essay, "Reform Congress - Save ourselves" and give me your reactions.
http://www.huffingtonpost.com/daniel-hough-jones/reform-congress-save-ours_b_959207.html
Thanks,
Daniel Hough Jones
Certainly if it was to get accoaldes, including publications, all would be on the bandwagon.
Without individual culpability, all that ethiticists do is pontificate.
See my comments above. I referenced you. Read my essay, too. I'd like your thoughts.
Sincerely,
Daniel Hough Jones
And it seems you don't have to be an 'ethiticist' (whatever that is) to pontificate, or rather, to point fingers for no good reason and blow a lot of hot air around.