What is your feeling if one of your family member’s cell is immortal and widely used in science? This is the first question I think about when reading “the immortal life of Henrietta Lacks”.
For me, I will be proud of this family member since his/her cells have a such important contribution to science, including developing new vaccines, studying on certain disease and saving people’s lives. In addition, the cells which are also part of his/her body could be immortal in this world make me feel it is kind of commemoration, like this people never leave us. However, when I read the first part of this book, I found the family of Henrietta was very angry about the cells were used by science and they did not want to talk about anything about Henrietta and her cells at all. I was curious about the reason and their thinking until I learned what happened on Henrietta since she went to John Hopkins.
It is the way of treating colored patients by doctors that time. At first, Henrietta signed a form before any treatment: “I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment”. It is a little horrible when reading this sentence. It sounds like sacrifice agreement rather than treatment agreement. This form seemed to be designed for asking for people’s lives rather than saving them.
And soon, the horrible dream came true. The doctors “burned” Henrietta by laser for killing the cancer cells. Although Henrietta kept telling doctors about her pain many times, the medical record still be wrote that “no evidence of recurrence” and they continued using laser to “burn” Henrietta until nothing could help her except analgesics. This is the reason made Henrietta’s family believed that the white doctors were doing experiments on colored patients in hospital. They believe that the doctors burned Henrietta to dead. The lists of Henrietta’s medical history in Page 16 also showed that colored people was afraid of doctors and hospital even they had various diseases.
I have the same question with Rebecca that “what will happen if Henrietta is a white people? Is she will be recovery by the careful treatment and check at the early stage of the cancer”? I think the doctors in Hopkins did not treat Henrietta seriously and professionally, just like they take her cells without asking. I also doubt the dose of laser on Henrietta was part of the experiment that what amount of laser could kill cancer cells safely. At that time, the way of dealing with colored patients by white doctors may be even worse than how the scientists treat animals today. It really cost a lot before every scientist or doctor to learn how to respect the life today and each of us should put it on the first place when doing research.
As last time I was leaving for another class, so I would like to share some of my points about our discussion.
In my opinion, the local knowledge is beneficial to the society, scientists and engineers. The relationship of “local knowledge” and “science” is similar to that between “practice” and “theory”. It is because that the local knowledge is come from the direct evidence of one’s eyes and life experience of people who suffer the problems, so they could feel the impact more deeply. They could provide the details that how the problems influence their daily life and what the side effect triggered by it. Some of them may be neglected only by statistical analysis or instrumental experiment rather than personal experience. A simple example could be: during my master study, my school tried to change the years of master study of all majors to two years. This was due to the high efficiency theory from some researches and it worked very well in many developed countries. However, it would not work well for the students of Plant. Normally the plant growth needs 1-2 years, so they need to graduate before getting any data. At last, the policy was changed depend on different majors. It is also true that sometimes the local knowledge is not correct and may be misconception or misunderstanding. But it is still a valuable source for scientists to improve their research with a full consideration, especially when the “local knowledge” is logical and thought through.
I think “knowledge-making” is making policy depend on the expert and professional knowledge. It needs a thoroughly study from the theory and previous data before finding out the rules and drawing a conclusion. For the “decision-making”, it is making choice which includes find the problem, set a goal and then choose the solution. The knowledge-making could be used on making policy like the safety level of lead in drinking water. It needs the widely test of residence living in different types of room, the drinking habit, lead source, the rate of lead increase in the water and health evaluation like blood test. Sometimes the “knowledge-making” works better and sometimes the “policy-making” is more practical such as the public opinion is hard to uniform and local knowledge is not enough for the public to have an overview about the whole case. However, both the decision-making methods should be made carefully after overall study and listen to the public.
Last class we had an interview with people from the Clean Air Coalition of Western New York (CACWNY). Each of the members stated his/her position and perspectives in TCC case and we posed plenty of questions, made it as a press conference. I do learn a lot from their points and have a more comprehensive understand of this case. Also, I think CACWNY is actually a good example of ethic.
At first, they are good at listening to public. One of their members mentioned that she had a door-to-door interview with the residence to learn their feeling and opinions about the air pollution in their community. And she was surprise to find that some residents were really happy that someone would listen to them and want to know their situations, especially some of them suffer a long-term disease. The CACWNY members also care about how to make residence understand their work and trust them. One of the members stated one needs to respect people and understand they have different background which give them different language, cultures and different way of thinking and reaction. It is important to work together with the public by asking questions and bringing information to each other.
What’s more, the CACWNY actively tried to find out the solutions of air problems in Tonawanda district. They not only educated people how to protect themselves from toxics, they were also working on make new policy. The CACWNY members also stated that they were pay attention to collect reliable data to show the problems to public and other departments. It was a sharp contrast with the conduct of WASA in their press conference. The WASA failed to give data to prove their statement or policy, especially refer to the recommended flushing time before drinking water. It seems that WASA gave such a suggestion only for coping with the request of EPA and finish the work on noticing and educating the public. They were not care whether their suggestion worked. This made the public lose their trust of the agency since WASA neglected the part which the public cared about the most.
Also, one point from CACWNY deeply impressed me is that “don’t be afraid to do right things”. When they found the EPA models were clearly wrong, they decided to make new policy and tried to solve the problems. It made me to think of WASA again. WASA should also found the suggestion from EPA was useless, but they just performed the rule of EPA. Of course, WASA did not want to do additional work and do not want to take the responsibility also.
It is true that the CACWNY fulfill their responsibility very well partly because they are a community-based group and their members are mainly the people from Tanawanda district. It is reasonable that they could understand this situation and the desire of local residence and try their best to protect the public which also includes themselves. However, why the other agencies such like WASA and EPA in DC water case had such a big gap with the public? Is it because the officers themselves drink the safe water, so the lead water is none of their business? If every agency could listen to the public carefully and put them into their consumers’ position, they definitely will obtain the trust, support and respect from the public.
Last class we talked about the relationship between science and public. It is interesting to find that public have many misunderstanding about science and scientists also misread public too.
I still remember the first class, we were asked to write down our impression on scientists. Many words came out as “boring”, “anti-social”, “nerd” and so on. It seems that public does not show so many interests on science and does not understand it very well. But is it the nature of public of feeling boring on science? I think the scientists should also responsible for this. When scientists have a speech to explain some new technologies or introduce a new concept to public, they always use scientific terms as they used in seminar or academic conference. Although they will explain this to public at first, the public could not keep focusing on these professional words and lose interests very soon. If scientists would like to use simple language to tell a story or try to use examples from our daily life, the public will interested and participate in science. What’s more, scientists should identify the difference between a academic report and public education. For popularize certain knowledge to public, scientists do not need to explore too much about its mechanism or principle. Clarify the basic concepts and their relationship to our lives is already an effective way of quick learning.
Also, scientists should be patient to public and trust them. It needs time for a new concept to be accepted by public. It is true that some people may overact or be emotional on it. But the scientists should gradually guide them to help them to understand rather than overlooking their reaction and questions. If scientists could not take their responsibility and provide reliable information, they would only deepen the gap between science and public. In addition, scientists should not expect professional suggestions from public. What scientists could learn from them are mainly their complaints. The complaint means problem there and it is just the part need to improve for science.
However, public should also understand scientists too. Scientists afford a big pressure when questioned by public, especially when there is potential dangerous of their projects. Public should authorize scientists time and funding to try and to fail, and not to be too eager to except a solution.
Public could participate in scientific activity by giving suggestions while scientists could learn from public by listening their advices and complaints. Both of them are responsible in keeping a healthy social relationship and trust each other.
Last class we were talking about an interesting topic: dog can help dog, why human cannot help human? I agree with Dr. Edwards that this is because dog’s mind like 3 years old children, they do not calculate their lost before giving a hand to the others. I believe that human also have the nature of helping each other, but what gradually change them? I try to find out the reasons.
I think it is our society changes us a lot. It is hurt to see a little girl was hit by a car and more than 18 people passed by but no one gives a help. However, it is “dangerous” for helping a stranger in China now. News reported that some helpers were slandered as “trouble-maker” by the wounded or their relatives. Sometimes this was because the real trouble-maker could not be found and the wounded lost consciousness that time, so the helpers became the largest suspect just because of his/her timely helps in an accident. But in some cases, people live for pretending hurt and ask money from the helper by making a trick. Although these were few to happen, it was spread quickly after report and no one dare to help the others.
However, there are also positive social influences on people’s behavior. Also happened in China, there was a serious train crash in July 2011. After hearing the big sound, nearly all the local residence of that small town came out and sent the wounded to the nearest hospital by car, by bicycles or simply by human. The hospital also called back most of their doctors and saved people’s live for free. Soon the hospitals of nearest city also actively participated in this emergency. The next morning all the big hospitals nearby were full of people who came to donate blood. I don’t know the local residence only follow the first one who gives a help or there was a tradition there to help people selfless. But they really influenced other peoples around them to help each other.
It depends on you whether to construct an ethical/moral standard of yourself and keep it while surviving in this complex society. However, once you insist your rules, you may find that people around you also follow that rules.