"Natural Laboratories"

The article “ ‘Natural laboratories:’ Medical Experimentation in Native Communities” seemed to have two main purposes. The first was to serve as an exposé of the horrific trials of vaccines and other experimental medications on Native Americans; the second purpose was to discount the usefulness of vaccines, and to a lesser extend, western medicine in general. I thought that the author accomplished the first purpose very well. The attacks on vaccines and western medicine, however, were not supported well at all, and many of the facts presented were twisted or cited out of context to support this idea.

One example would be the discussion of the polio vaccine, which was used to demonstrate one drawback in general of vaccines (not of their testing, but just of their use in general in medicine) as being that sometimes they caused people to contract the disease that they were being vaccinated against. It was cited that between 1973 and 1983, 87% of all cases of polio were caused by the vaccine. But totally missing is the fact that polio cases were really, really rare at this time because the vaccine protected the vast majority of the population from the disease. In the 1950’s, right after the vaccine’s invention, that percentage was probably much less than 1% since polio was so common then. The beneficial effect of the vaccine was completely ignored.

It’s not fair to deny the right of Alaskan natives to practice or prefer their own traditional medical practices; but it is inaccurate to reduce western medicine to something that only “senselessly dissects, vivisects and experiments on both animals and human beings, when there are much more effective preventative and holistic forms of medicine,” as was stated in the concluding paragraph of the paper. Lost in this statement is that

a) western medicine has come to prescribe many of the same preventative measures and treatment recommended by traditional medicine; for example, many drugs used in modern medicine have been derived from plants used by traditional healers (aspirin perhaps being a classic example)

b) Some experimentation had to have gone on in the past to determine what plants were useful to use in sickness and which ones were toxic; the history of that experimentation that led to the development of traditional medical practices just hasn’t been passed on to us today. Ideally, in both modern medicine and traditional medicine, experimental remedies would be tried with the full awareness of the dangers and consent on the patient’s part, and the underprivileged would not be singled out to serve as human lab rats.

c) Plus there are some problems that modern Western medicine has more effectively dealt with than traditional medicine. Cancer is no longer the death sentence that it used to be; vaccines were used to eliminate smallpox.

Using people as guinea pigs without their consent is unpardonable; so is targeting specific people or groups of people perceived as "others" as guinea pigs. But I don’t believe that this issue is an inseparable part of western medicine, nor necessarily that western medicine has been less effective (or even completely distinct from) traditional medicinal techniques, as the conclusion of the paper states.

(a really long blog, that wasn't supposed to happen...sorry for being long-winded)

Involuntary Sterilization in Today's Society

Upon watching the documentary "La operacion", I was reminded of an article that I read almost a year ago in which parent's of a developmentally disabled girl allowed their daughter to be sterilized. The girl had a disease in which she would never be able to fully grow past the size of a seven-year-old. Because she would always look like a little girl, her parent's wanted her to remain sexually inactive and not have the ability to reproduce. While this is a slightly different topic, I thought that the article tied in with our numerous discussions about human rights, including the right to consent to any form of surgery or medical treatment (i.e. Puerto Rican women being sterilized without proper education, intersexual individuals receiving "corrective" surgeries at birth without consent, and the American government forcefully using Native Americans as guinea pigs in order to test vaccines)

While I could not find the exact article, I did come across a very interesting study, published by the Pediatric Committee on Bioethics, entitled, "Sterilization of Minors With Developmental Disabilities". Written in 1999, the article states, "Sterilization of persons with developmental disabilities has often been performed without appropriate regard for their [patients'] decision-making capacities, abilities to care for children, feelings, or interests." Parents and surgeons are taking away women's rights to reproduce because the patients are deemed not well enough to produce and raise healthy children.

While I obviously know very little about the topic, I still have to question the act of taking away one's right to reproduce without his/hers complete consent. If a woman could not physically give birth to a child, why must she be sterilized? In addition, what if a developmentally disabled woman wants to have a child but is deemed unfit by doctors? Who says she is not allowed to have a child? Does this not seem very similar to the Nazi's Eugenics movement in which inferior races (blacks and Jews) and handicaps were exterminated in order to allow the superior Aryan race to take over? I am deeply troubled by the practice of sterilization. Who has the right to say whether or not a person can have the ability to reproduce?

http://pediatrics.aappublications.org/cgi/content/full/104/2/337

"Once Drugs are Proven Safe they are generally no longer available to Indian Health Services"

We have discussed in class about the exploitation of many different racial communities; however, I feel that the article, "Natural Laboratories" truly shows the atrocities of the medical experimentation that was committed in Native Communities on United States Soil. The article begins with the words of a native woman stating, "They gave us vaccinations. Needles broke in some of the people's arms. They were not removed... Now our eyes are gone, our teeth are gone... This was forced on us. We had no choice." What makes this statement even more terrible is the fact that it was given on March 24, 1993. Prior to reading this article I had no idea that research was done to people in the United States in Native American communities to this extent.

I had always just assumed that vaccinations were perfect, harmless, and safe. I never stopped to think about how they were developed and what type of negative effects they could have on my body or the body of the humans in which they were developed. Through reading this article I have learned that while vaccines are often given credit for eradicating a disease, which is how scientists support their exploitation of individuals, in many instances, that the illness is already on a decline because of environmental factors. In fact, in 1985, the CDC or Center for Disease Control reported that the polio vaccine itself caused 87 % of the cases of polio in the U.S. between 1973 and 1983. Why then are these vaccines still being tested on human beings if they are not proven always effective? I think the question arises again over does the ends justify the means? Many of the Native American communities where the testing of these vaccinations are performed do not have the full information on vaccination programs before participating in them and they deserve to have the knowledge to make an informed decision, just like the women of Puerto Rico and all over the world have the right to obtain the knowledge to make informed decisions about sterilization and family planning. One trial program performed on Native Americans that I found to be the most shocking is as follows. A hepatitis trial vaccine program was established in South Dakota in 1991 and participating children were given an experimental hepatitis A vaccine, and the control group was given a hepatitis b vaccine. The use of vaccines was not the shocking instance of this case, but rather the fact that children were offered candy if they offered themselves up to be used a guinea pigs and parents were offered free diapers to sacrifice their children. How can candy or diapers be worth the life of ones child?

Native Americans are one of the poorest groups of people in the United and many cannot afford healthcare services. As a result they have a life expectancy 47 years. They are good enough to have vaccines tested on them left and right, and they are exploited nearly to the point of death, but once a drug has been proven "safe" on Native Americans, they are unable to afford it. This is just terrible and wrong and something really needs to be done. How can a group of people just be used and treated like lab rats and then once they are harmed, not even be given the drugs that they helped to prove safe and suffered in the process? Something is severely wrong with that picture and Native people need to be respected.

After leaving today's class, I felt as though we had left an important issue and subject untouched, or only briefly mentioned. We discussed the Tuskegee Study and how it was this horrible experimentation that involved hundreds of low-income black men that were kept misinformed and treatment was withheld. It was brought up a few times that this is surprisingly recent, continuing all the way into the early 1970's. While it is important to note the progress in the area of medical ethics that has come out of this, we shouldn't be naive to believe that there are no longer issues related to human medical experiments and the ethics behind the studies we may or may not hear about. The exposure of the Tuskegee Study in 1972 was sadly not the end of the use of humans as a test subject. There are various accounts that reach all the way to present day of experimentation done of human beings. These studies overwhelmingly use mentally disabled patients who are either not given the choice of consent or do give consent, but may not understand the extent to what they are signing. I found other studies that included children, the majority of whom were minorities. It's hard to overlook the situation when you read about a study in which 1500 six-month old Hispanic and black infants were injected with an experimental measles vaccine that had not been licensed in the United States. The parents were never informed that the vaccination was experimental. This took place in 1990. There are more examples that are even more recent than this.
At the end of class testing outside the United States was again mentioned. I think this is a very important thing to remember. We've made these rules about the ethics of medicine and human experimentation, but if they aren't being followed or aren't working all the time in the United States, is there anything that can be done outside the US? This similar issue was seen in the movie, "La Operacion" and our discussion that stemmed from that. The same rules don't seem to apply in Puerto Rico, and that's a territory of the United States. I would hope that the companies that are doing these testings would have enough respect for human life, but unfortunately we've been shown time and time again that they have not. I don't know whose responsibility is it to monitor these fields, but I'd be interested in finding out how it all works. We continue to bring up throughout all our discussions the fact that we have to take the time period into account and that this could never happen now because there would be an uproar. As we keep saying this the questions comes to my mind, "would there really be an uproar?" If that was true, wouldn't we have heard about some of the more recent issues. I personally hadn't heard about the whole Pfizer testing in Africa until this class. I can't speak for everyone and this may be my fault for not staying up on the news as best I should, but there doesn't seem to be the uproar that we assumed there would be. We (as a society) always seem to look back in history and say "we'll never let that happen again, if that was now we would stand up and demand change." I don't want to be such a downer, but the I can't stop thinking that it's just a bunch of words. Not to say that we haven't progressed, because we have, but a lot of the issues that were around "back then" and that we said we would change are still around. They may have taken a different form, but that doesn't mean that they've gone away. Something to keep in mind.

Several people drew parallels between the intersex cases and the sterilization of Puerto Rican women in that neither group was informed very well on the surgeries. Not only was there a lack of information, but another party usually made the decision for them. In the instance of intersex children, the doctor would usually assign the gender depending on physical requirements and the husband was usually the one signing the consent forms for the sterilization.

Another parallel that came to mind was the influence of Western culture on Native American tribes with cross-gender females and the influence of Western medicine on the reproductive culture of Puerto Rico. Western culture changed tribal views of the cross-gender females from being normal to being unacceptable and it also shifted the value of work that a man and a woman did unequally. I’m not sure if I remember this correctly but I thought the documentary made and interesting point with the picture of some goddess who I think represented fertility. To show how many women had been sterilized, a picture of Puerto Rico was shown covered in pictures of the goddess. Some of the pictures were then removed to show the portion of the population that was sterilized. I think the insertion of the goddess of fertility into the documentary shows that at one time the culture valued a fertile woman. Now due to influences and propaganda from the United States, the Puerto Rican society has been taught to equate a small family to progress even though the attempt at population control has not improved the standard of living greatly.

Before watching La Operacion, I was only aware that China and India were the two main countries that suffered the most from population growth. So I would never have thought that population growth was such an issue in Puerto Rico. After watching the movie it made me wonder how China’s population controls relate to Puerto Rico’s attempts to control its population. One well known control method in China is the one child only policy which was started in 1979. The Chinese government often gave special benefits to families who agreed to have only one child. Families who had more than one had a portion of their income taxed or faced losing their jobs. Unplanned pregnancies or pregnancies without proper authorization had to be aborted. I don’t think that the documentary mentioned that there were any laws in Puerto Rico that said families could only have a certain number of children but only that smaller families would mean more economic prosperity. Like in Puerto Rico, sterilization is also the most prevalent form of contraceptive in China according to the National Family Planning and Reproductive Health Survey performed by the Family Planning Commission in 2001. Of the 200,000 people surveyed, 46% had been sterilized and of that percentage 38.1% were women and 7.9% were men. I think this statistic is interesting in that the low number of men sterilized perhaps indicates that China also has a myth about procedure causing a loss of “energy.” I’m curious if there are any other reasons for why men are so against being sterilized.

Population Control, is it really that bad?

I know the majority of us in class today were completely against they way sterilization was happening in Puerto Rico. We think the women should be more educated about the procedure and/or the other methods of birth control. The should be able to give informed consent and not just allow the husband to decide. In the U.S. it is a choice for all women whether or not to have this procedure performed, and they are provided with all the necessary information to make an informed decision (discussing the side effects and consequences). This procedure is extreme also (serious side effects, irreversible), and women in the U.S. are provided with other methods as well. I think this is great, but it is also somewhat idealistic. This may sound horrible, and someone mentioned it in class, but some people just should not have children, or more children. I think it is irresponsible for families with little resources to add more burden to their load. But by doing so, they not only cause a problem for themselves, but for society who becomes responsible for these people.

I want to make it clear that I do not agree with the method advocated in Puerto Rico. However, if population control is necessary than something must be done. I completely disagree with surgery being performed on women who do not understand the procedure. I think the family planning clinics should be more focused on family planning than trying to get consent for sterilization. The fact that this procedure is performed on uninformed women leads to more serious consequences because they do not understand the necessary steps they need to take after surgery to make sure they heal correctly. The side effects can become much more serious. In the U.S. so many more methods are widely available and discussed. I think that that is important. But it is also important to understand that many of these other options are widely abused because they are so openly offered.

I think a balance must be reached in Puerto Rico where women can gain access to safe and healthy birth control methods, but are also educated on the consequences they pose to themselves and society by increasing their family to a point where they cannot be supported.

What happened to allowing people to make educated decisions?

The movie, “La Operación”, was unfortunately not a complete surprise to me. In another class I’m taking, we are reading Not Quite White by Matt Wray. An entire chapter of the book is devoted to the Eugenics movement, explaining its origins, its mission and citing specific cases. The case most fully developed in the book is the case of Carrie Buck, a woman who was deemed “feeble-minded” and since the state decided that she would therefore most likely give birth to more feeble minded people, she should be sterilized. Carrie Buck appealed her decision and eventually the case went to the Supreme Court—she lost.
What struck me the most out of this case was the wording used by the doctors and eugenicists who were all advocating Carrie’s sterilization. There were no definite terms used because there was no way to predict the exact intelligence of offspring that hadn’t even been conceived yet, and still her sterilization was demanded by the law.
While I am certainly completely in favor of sterilization by choice, forced sterilization is cruel and inhumane. The idea that a woman is no longer in control of her own body and treated as though she cannot make her own choices is violating and degrading. I understand the idea that sterilization in many cases is an attempt to prevent the poor from growing poorer but I think that removing the woman’s right to choose is unfair. I would hope that providing families with education about birth control and even as a last case scenario, sterilization, and allowing them to make an informed choice would be considered a more appropriate means of avoiding increased poverty—regardless of race, class, or perceived intelligence level.