Part 1: The Human Body As Test Dummy — poet, teaching artist, mama

“Whatever you can consider in your mind, is probably capable of being produced in the synthetic biology.” Dr Ken Wickiser, associate dean of of research, Westpoint Academy

“Moderna’s covid-19 vaccine, weather satellites, GPS, drones, stealth technology, voice interface, the personal computer and the internet are on the list of innovations for which DARPA (Defense Advanced Research Projects Agency) can claim at least partial credit.” - The Economist July 3, 2021

“There are those who say: the First World War was chemical; the Second World War was nuclear; and that the Third World War— God forbid— will be biological” M. Ainscogh, Next Generation Bioweapons; Genetic Engineering and Biowarfare, April, 2002

I taught dystopian fiction to an after-school program, because they liked it better than poetry. The Ones Who walk Away from Omelas by Ursula LeGuin, is a dystopian short fiction story about a society where there is seemingly, no suffering. Each summer, there is a coming of age ceremony, where each individual learns there is a terrible secret: there is one child, chosen to bear all of society’s suffering, imprisoned secretly underground beneath the city. The last line is about the rare individuals who leave the society, instead of accepting their place among their peers, who are contributing to one child’s suffering for the supposed good of the many.

"The place they go towards is a place even less imaginable to most of us than the city of happiness. I cannot describe it at all. It is possible it does not exist. But they seem to know where they are going, the ones who walk away from Omelas.”

It makes us all hope we’d be the ones who walk away from Omelas.

In 1955, Dr. Saul Krugman knowingly infected over fifty disabled children between 5-10 years old, at the Willowbrook school in Staten Island, New York, with hepatitis in hopes of discovering a hepatitis vaccine. Back then, he likely believed he was helping this population prepare for future outbreaks. After all, the overcrowded (at times holding 6,000 patients instead of the recommended 4,000) Willowbrook campus was already known for pestilence and poor treatment of patients. Forbes magazine wrote:

“In 1965, Robert F. Kennedy, then a New York Senator, made an unannounced visit to Willowbrook and left appalled. “There are no civil liberties for those put in the cells of Willowbrook,” he later testified before Congress, calling the institution a “snake pit.”

Dr. Krugman wrote about the weight of the decision to infect pediatric patients in a 1958 paper published in the New England Journal of Medicine. His reasoning included that the strain of hepatitis in Willowbrook wasn’t too severe, many of the children would get infected anyway, and that any knowledge gained from the experiment would in fact help all Willowbrook residents. The study was well known, at the time it was blessed by the New York State Department of Mental Hygiene, and the Armed Forces Epidemiological Board of the Surgeon General’s Office. Willowbrooks’ experiments are now universally viewed as unethical and the knowledge gained was not deemed worth the children’s suffering of jaundice, liver disease and more.

In the 1980’s, antiviral drug companies, funded by the government, enrolled foster children in very early antiviral research. This level of research is considered the riskiest. Researchers reported some children had to be taken off the drugs because of "serious toxicity," others developed rashes, and the rates of death and blood toxicity were significantly higher in children who took the medicine daily, rather than weekly.

Some children died during the study from a variety of causes, including four from blood poisoning, and researchers said they were unable to determine a safe, useful dosage in children of the riskier drugs. Federal investigations didn't find that any child’s death was caused directly by the drug trials.

NPR reported a perspective from Dr. Kline, an infectious disease specialist from Tulane University, who has been on the ground researching HIV from the beginning. From his viewpoint, the foster children were being given an opportunity to survive, by being offered these experimental treatments. While that may be true, in 2005 The Associated Press found that at least half of the foster children who participated in these trials were not provided required independent advocates.

In 2004, Polyheme blood substitutes, produced by Northfield labs, was used in a widespread experiment with the FDA’s approval on the American people. More than 600 patients at 31 trauma centers were unknowingly enrolled in the study. Participants were given the fake blood once in an ambulance enroute to a major trauma center, and then in the ICU for an additional 12 hours. Northfield Labs enrolled patients who were unable to consent in this experiment, and some may have died. In 2006, the American public was notified of the study, but given no option to learn more about or halt this study other than donning a blue bracelet. “To opt out of the study, contact Northfield Labs www.northfieldlabs.com and request a blue bracelet. If worn, you will be exempt form the trial.” ABC News reported in July, 2006. After three years of injecting the oxygen-bearing synthetic into trauma victims, on May 9, 2009, the FDA shut the experiments down. Reasons for forcing the company to shutter experiments to losses over 200 million dollars, included the benefits didn’t outweigh the risks of the studies.

In 2023, DARPA (Defense Advanced Research Projects Agency) announced funding for blood substitute research in over a dozen universities. Human trials will begin in 2028-2030. DARPA is the United States Defense Department’s research and technology arm, responsible for development of emerging technologies for use by the military. The question is, who is going to be enrolled in future studies, and is there any guarantee you will know if you are ever given fake blood in an emergency, and if it harmed you or not?

What theses cases have in common is they are the government deciding that the good of the many outweigh the misery and sometimes torture of the few children or adults in these medical situations. The lack of proper advocacy or consent to medical experimentation is the heart of the issue. The ability to consent to experimentation on our bodies, even in the name of good, is crucial. Experimentation is only ethical if consent is given, or if consent via advocacy is implemented when necessary. If I am laying on a stretcher in an ambulance and require blood transfusion, I personally would like someone to ask my husband if he consents to me being experimented on, instead of applying life-saving measures. You don’t know what you don’t know.

Stay tuned for the rest of this four part series!

Dr. Kline and Romanian pediatric AIDS patients 1988

Defense Advanced Research Projects Agency

**Dr. Saul Krugman with pediatric patient 1960s**

Willowbrook State School, where Krugman practiced

sources listed in part 4