Case 1–Studying HIV/AIDS
In the February 2007 Issue of Essence Magazine, writer Kristal Brent Zook pens a disturbing article on a study known as The New York City AIDS Experiment. The subtitle goes on to explain that over a 13 year period (1988-2001), a government agency tested potentially dangerous AIDS drugs on Black and Latino foster children, ages 6 months and younger, most without parental permission but largely in the name of medical research.
The article goes on to describe the experiences of several families involved in the “clinical research.” Families discussed how they were brought into the study unknowingly while others believed that the “meds” were in the best interest of their children and yet others joined for financial compensation. One story is of the HIV Pediatric Nurse, Jacqueline Hoerger who now lives in Canada. Ms. Hoerger at the time worked for Incarnation Children’s Center in Harlem, NY and one of the private agencies taking part in the clinical trials. She followed instructions and would administer the drugs to foster children. When she fell in love and became a foster parent to two HIV-positive sisters ages 3 and 6, from the Center, the medical treatments took on a more personal note. She continued to mother the little girls and provide them with all the help they needed including healthcare as advised by the doctors. What she began to notice was that despite the best schools, diet and rest, one of the young girls showed signs of hyperactivity and did not eat. She also noticed that the other child would overeat but would not talk, move or play.” Other parents reported symptoms that included cramps, diarrhea, swollen joints and intense pain upon touch.
Nurse Hoerger like some of the other parents became concerned about their children’s symptoms and decided to stop giving them the drugs. In this and other cases, they soon noticed improvement in their children’s health once taken off the “prescriptions.” Like other parents, that made the decision to stop “cooperating” with the doctors, Ms. Hoerger would come to learn that her choice would change her family’s life in ways she could not have imagined.
A knock on the door, would begin the process that so many in the study would come to describe as the beginning of a nightmare. The children would be removed from their homes, and placed into protective care of The Administration for Children’s Services (ACS). Parents and guardians would be accused of medical neglect, threatened by city officials and served court summonses. This action would ultimately get the children back into the guardianship of “the system” which in effect became the decision maker for these children—allowing the experimentation to continue. The clinicians involved were using highly experimental drugs on the children like AZT, ddi (Videx) and in some instances a combination of both drugs which had not yet been federally approved. What was also interesting to learn is that all of the children did not even have HIV! In fact, in some cases the medicine seemed to have triggered the disease.
Although records for the studies exist, a mysterious fire destroyed some of the files which may leave many more questions unanswered even with an impending 2007 report scheduled by the Vera Institute of Justice.
**The above story is the basis of a 2004 BBC documentary Guinea Pig Kids which Journalist Liam Scheff brought to light in an online article.
Case 2 —- CHEERS
The American Chemistry Council gave the EPA $2.1 million to study how children ranging from infancy to three years old ingest, inhale or absorb chemicals. In the two year proposed study, the children would come from 6 clinics in Duval County, Fla. Based on the demographics of these clinics, the children would represent low income and undereducated households. As an incentive or appreciation for the “help,” subjects and their families would be given $970, a free video camera, a T-shirt and framed certificate of appreciation. Interestingly, two US Senators Bill Nelson and Barbara Boxer became vocal upon learning about this proposed study and were able to stop it from moving forward.
Case 3—Sodium Nitrate
Meat processing plants commonly use Sodium Nitrate in most packaged meat products found at the grocery store. The chemical is used as a preservative and adds “shelf- life” to pepperoni, breakfast sausage, deli slices, lunch meat , etc. Apparently, when one digests sodium nitrate, it mixes with the stomach’s digestive juices and creates a chemical compound known as nitro amines. From reference materials I have read, nitro amines are a cancer-causing chemical. Seemingly, when this chemical is injected into laboratory mice, it has been known to cause breast or other form of cancer.
Case 4— Racial Studies in Schools
A November 13, 2006 article in the New York Post by Carl Campanile, stated that The NYC Board of Education Officials quietly approved more than 50 research projects related to health, psychology, race, ethnicity, gender and religion. Once again, these studies were mostly on kids in the poorest neighborhoods. Nearly 200 studies were financed by multi-million dollar grants with the subjects being offered “modest cash payments” to parents and teachers and gift certificates for kids.
Case 5— Irradiated Beef
In 2004, Schools and day-care centers in Minnesota, Nebraska and Texas were reportedly ordering and serving irradiated ground beef to children despite protests from local officials and parents. This beef is exposed to gamma rays and electricity which kill harmful bacteria. Studies have shown a link to cancer as a result of eating this beef. During that time, Nebraska was ordering about 1 million pounds of ground beef each year for schools and day-care centers. It was noted that 2 percent of the order was irradiated beef. Not a huge number but enough to perhaps draw some scientific conclusions?
Case 6 —The Tuskeegee Syphilis Study
This is the famous study conducted for forty years between 1932 and 1972. The U.S. Public Health Service experimented on 400 black men in the late stages of syphilis. The men who were mostly illiterate Sharecroppers from some of the poorest counties in Alabama were told that they were being treated for “bad blood.” In essence the study was to understand the impact of the disease on the body through autopsies. Therefore the experiment was not to cure but to accelerate the disease and then study the dead bodies for the effect on the human body. Furthermore, it was meant to discover how syphilis affected blacks as opposed to whites. It was believed that whites had more neurological complications whereas blacks were more susceptible to cardiovascular damage from the disease. The free medical help was a major incentive for the black men and the prospect of medical research bolstered the study. Apparently by the end of the study, 28 men had died directly of syphilis,100 died of related complications, 40 of their wives had been infected and 10 of their children had been born with congenital syphilis. In 1997, President Clinton apologized saying that the US government “did something that was wrong-deeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens…..”
How does this continue to happen in America?
This was a question that came to mind and led me to look into the practice of using humans as guinea pigs. What I found was truly an eye-opener. The above cited cases are only a few in the volumes of medical research. I present these as examples and places to examine the question at hand. As in any debate there is always a ying and a yang. Current practices and laws illustrate that there are distinctly different view points on this subject matter. Medical researchers and their supporters explain that human medical experimentation is a valuable part of science. They say that there are studies that cannot be proven valid with the use of laboratory rats alone. They argue that in order to see the full effects of research we must see how the “targeted subjects,” namely human beings are affected.
On the other hand, In Nazi Germany, when it was found that during the Holocaust, concentration camps were being used as grounds for medical experimentation the world cried out loud for an end to such practices. As we advance in America, human beings as guinea pigs will continue to be an ethical question even with the current debate about stem cell research and the use of fetuses to treat degenerative diseases like Parkinson’s and others.
Are Human Guinea Pigs necessary in our struggle to achieve scientific and economic advancement?
What is your take?