Abstract
The western individual-based and autonomy-oriented informed consent model of human research is not suited to the mainland China. The aim of this essay is to find an appropriate informed consent model of human research in mainland China. The essay will introduce and analyze two cases occurred in mainland China to indicate that family participation in decision-making is necessary and important. The essay will present a model of informed consent, which be called “family-based binary decision model.” The essay will argue that this model is necessary. For that purpose the essay will discuss the factors that can influence human subjects’ decision making. Further, the essay will make a defense of this model mainly from the perspective of Confucian ethics. Finally, the essay will present some suggestions as to how to implement this model.
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Notes
- 1.
The three generations in a traditional stem family live together and have dinner together over a long period of time even till the older generation die. But the situation has changed with the development of the society. Subjectively, Chinese have more autonomy and hope to have more freedom. Objectively, the married children work or live in different city from their parents, so even parents and their married children want to live separately. But this state is temporary—when the married children have their baby, they often have not enough time to look after a baby, so one or both the older parents live together with their children and their grandchild. Sometimes, if their economic situation is good enough, the older parents live in another house which is very close to their married children and their grandchild—that’s “the distance of a bowl of soup.” The distance is very appropriate: both of them have independent living space, and they can take care of each other. If the grandchild grows up, the older parents may go back to their hometown. But if the older parents are too old to live separately, they will live together with their married child again. So, living together or not can be temporary in different situation. But eventually most will live together for quite a long time, so this type of family was named“temporary stem family” by Yao Jun.
- 2.
The ‘leaders’ I refer to are, in Chinese culture, ordinary people (i.e., not necessarily government officials) who are in charge of some part of an organization—for example, a school or company. Given their leadership role, people tend to trust them. For example, I have seen a head teacher (a teacher in charge of a class) of a university recruit subjects from his class during the break and encourage student leaders to recruit students actively. To give another example, a newspaper reported that since a village official allowed a new drug trial to be carried out in his village, more than a hundred people trusted him and participated in the trial. See, Li Guangming. “Dozens of Farmers in WangJiang County AnHui Province Became Subjects Inexplicably”. Legal Daily. October 29, 2010, http://www.legaldaily.com.cn/index/content/2010-10/29/content_2332847.htm?node=22668 .
- 3.
The theory above is summarized from the chapter of DaXue (“The Great Learing”) in Liji ( The Classic of Rites). The original text is “the ancients who wished to illustrate illustrious virtue throughout the kingdom, first ordered well their own states. Wishing to order well their states, they first regulated their families. Wishing to regulate their families, they first cultivated their persons”. See, Sturgeon 2013c.
- 4.
The Mao Shi ZhengYi, also named Mao Shi Xu, is a book annotating the ShiJing ( The Book of Poetry, a famous classics in Western Zhou). The authorship of Mao has not been confirmed, but it is generally thought that it is MaoHeng in the Han Dynasty. This book has no English version, so I translate the sentence myself. The Chinese text is: 亲亲以睦友, 友贤不弃, 不遗故旧, 则民德归厚矣.
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Acknowledgments
This essay was funded by the “Humanities and Social Science Research Fund Plan of the Ministry of Education of the People’s Republic of China” (12YJA720003) and the “Soft Science Project in ShanXi Province” (2013041084-01).
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Deng, R. (2015). The Informed Consent of Human Medical Research in Mainland China: A Family-Based Binary Decision Model. In: Fan, R. (eds) Family-Oriented Informed Consent. Philosophy and Medicine(), vol 121. Springer, Cham. https://doi.org/10.1007/978-3-319-12120-8_13
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