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Gene Testing: Right To Know
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2001-01-01
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¡¡¡¡In 1995, a research project to collect DNA samples for asthma testing from peasants in Anhui Province was launched jointly by an American company, Harvard University, Brigham Hospital affiliated with Harvard, and the Anhui Medical University. During the collection of blood samples, from which DNA is extracted, researchers did not fully explain the program and testing procedures to the peasants, nor did they receive written consent from the donors. The peasants were told they were undergoing routine health examinations and given a small subsidy. ¡¡¡¡The researchers said they did not think peasants would understand detailed explanations or be able to sign letters of consent, as most of them were illiterate. And this drawback would be an obstacle to their research. ¡¡¡¡Here are some responses to the controversial situation: ¡¡¡¡¡°I believe the taff should have made a clear explanation to the peasants, at least a very general one to tell them why their blood was being used. In Chinese tradition, there is a belief that the human body belongs to one¡¯s parents. I our modern view, the human body is owned by the individual, so he or she has the right to know why their blood is being used. In this way, ¡¡¡¡¡°Some may say that although this action hurts only a few people¡¯s interests, all of mankind will benefit. It sounds reasonable and worthwhile to sacrifice the interests of the few for the majity. However, man¡¯s value cannot be measured by adding or compared by computing. As for an individual, he or she is priceless, and no ne can set their price. ¡¡¡¡¡°I understand the difficulties in the actual situations. So we may adopt some flexible methods. We do not need to tell the donors what a gene is and what DNA is. We perhaps can let them know thei blood if being used to cure their diseases and those of others.¡± - Dong Jun, from Sino-chem.¡°This problem has a very long history in China. I think it is a cultural problem The reason provided for concealing the blood use is the illiteracy of the research subjects. Essentially it is a feeling of colonialism and a feeling of cultural superiority. Naturally those peasants are defined as culturally inferior and submissive. Because you are poor and illiterate, you need not know. Even if I explain to you, you could not understand. So why should I bother? But in another sense, why do doctors try their best to save or prolong patients¡¯ lives, even when they know their efforts are useless? It¡¯s the same case here. Doctors save patients in a physical way, and those peasants need tbe considered in a spiritual way. ¡¡¡¡¡°The proper administrations and medical institutions shouldrealize the ideological background behind this ¡® little thing.¡¯¡± - Jiang Wentao, from Beij University. ¡¡¡¡¡°In my humble opinion, the right to know is a right given to everyone as soon as they enter the world. This right sould get more respect than the lack of knowledge. ¡¡¡¡¡°This situation reminds me of another case. The hospials in China formed a rule not to tell patients when they had a fatal disease. It seems humane. However, the patient will be destroyed physically and psychologically when the disease eventually makes itself known. That is the bitter outcome to the violation of patients¡¯ right to know ¡¡¡¡¡°Of course, to respect peasants¡¯ and patients¡¯ right to know will make the problem more complicated. But our society is advancing. Like children, we cat cut mathematics class in order to relax. So people need to become more skilled in telling the truth. Persuasion and rhetoric are the courses for those medical experts to take. All in all, anyone¡¯s right to know should be respected whether his social status is high or low.¡± - Liu Yang, college student. |
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