Teaching about genetic privacy Fujinhua The high school affilitated to beijing normal university

The high school affiliated to beijing normal university

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Genetic privacy and information： 基因隐私权和信息

What's the gene? What's the HGP ? What's the gene privacy?

基因：是指具有遗传效应的DNA片段。

Four sorts of the chromosomes:

Chromosome is the vector of the genetic information

X染色体

With the development of the gene engineering, raising a series of complex social problems, particularly those of privacy. On June 26 2000, scientists completed a map of the entire sequence of human genes. While this breakthrough holds great promise for improving medical treatments, it also presents unique challenges to principles of privacy and non-discrimination. The mankind became more and more “transparent”. If a person’s gene map was disclosed, his love, child, work , insurance and other aspects will be seriously influenced.

人类基因组草图的完成和今后科学家的进一步研究将提供出人体的细节，使我们充分了解和认识自身。在草图中绝大多数基因看起来是标准的复制品——人类中的每一个个体分享着99．9％的相同基因组成，每个个体的惟一性是由剩下的0．1％造成的。当科学可以在基因上揭示人与人的不同时，人类的隐私就到了基因层面，这0．1％就构成了人类 的基因隐私。 。

Right of privacy is a kind of civil right which means that citizen has the right to keep his own message unknown by other persons and has the right to keep his private activity not to be interfered with. 那麽我们怎样才能知道体内基因的健康状况呢？（英文材料：第二个框图）

Question 3: Question 4: Would you like to know your genes ? At what stage in life would you undergo genetic testing ? Question 4: Who should know your genetic information? 英文材料：第三个框图。

随着HGP的不断发展引发了一系列颇具争议的伦理问题： 其一是恋爱男女间、已婚夫妻间的基因隐私权与知情权的冲突。 其二是保险公司、用人单位、银行、学校、档案部门、公安机关等社会组织是否有权要求知悉公民的基因信息？

Discuss this question from four aspects： Marriage Childbearing Employment Insurance

案例1： 一对青年男女在做婚前检查时，测得男方患有梅毒。医生如实将结果告知女方，随后女方提出分手。男方觉得这种结局是医生一手造成的，并在情急之下将医生杀死。 如果你是医生你是否会将实情告知女方？为什麽？

Right to know, also called as right to learn the truth or right to know the truth, is a private rights which means that natural man has the maximum freedom to learn all sorts of message he want to know.

A couple want to have a health baby !

症状:智力低下，身体发育缓慢。患儿常表现出特殊面容：眼间距宽，外眼角上斜，口常外张，舌常伸出口外。又称舌样痴呆。

基因身份证60亿人中找到你 : 2002年9月，一则来自郑州的消息引来了许多人的关注：河南省人民医院医学遗传研究所制出了中国第一张18个位点的成人型基因身份证。据该研究所公布的资料说，只需要申请者提供一滴血或一根带毛囊的毛发、口腔黏膜细胞或肌肉、皮肤等任何组织细胞，从中提取DNA进行基因型分析，医生就可据此从DNA分子链上选出18个基因位点，再根据特定程序转化为防伪条码。 其实，国内最早的基因身份证出现在2001年年初，当时，是由四川大学华西法医学院物证教研室为刚八个月大的小男孩威龙制作的，选取了10个位点的个人非特异遗传标志以及DNA指纹防伪条码。这些条码中隐藏了个人的遗传基因信息，显示持有者存在的惟一性，拥有者将能与世界上其他60亿人口区分开来。

Do you want to have a gene ID card? I’m a bad penguin! haha

美国出现首例工作场所基因歧视案 02月12日11:20 美国公平就业机会委员会近日将美国北圣菲铁路公司告上法庭，要求这家公司停止对其雇员进行基因缺陷检测。这是美国首例与工作场所基因隐私和基因歧视有关的法律纠纷案。 据此间媒体报道，公平就业机会委员会在向艾奥瓦州苏城的美国地区地方法院提交的诉状中说，北圣菲铁路公司从部分雇员身上采集血样，然后进行基因缺陷检测，这种把基因检测结果作为雇人基础的做法违反了美国残疾人法案，应该立即禁止。公平就业机会委员会说，北圣菲铁路公司是首批承认对雇员做基因检测的公司之一。

该委员会在一份声明中说，“在科学和技术进步的同时，我们必须保持警惕，确保新的科技成果不被用于违反劳动者的权利”。有4万多雇员的北圣菲铁路公司表示将在今后两个月内停止检测。

Question 5: Would you take a genetic test if a family member asked you to?…… If an insurer asked you ? Who has rights to know the result of your test ?

We set genetic privacy and information as a elective course, not only make the students grasp the basic knowledge about genetic in advance, but also can they know and explain the newest progress of the gene engineering using that they had grasped. Which is meaningful for the students to cultivate the ability in supply knowledge . Further more, this course can stimulate the interests when we explain the technology of the gene engineering. Cultivate the creativity of the middle school students. which is very important to raise the characters and model specialist persons .

Through the feedback from the students, it’s easy to see that they have greatly enthusiasm on this subject. And they thought it is helpful to form scientific world view. In the class, we mainly discussed in group .in this way, the student can acquire more information from others. They hope that Bioethics can be popularized in the middle of the students.

Suggestion:

Chinese National Human Genome Center , Beijing

Thanks for your attention ! The end Thanks for your attention !

Right of privacy is a kind of civil right which means that citizen has the right to keep his own message unknown by other persons and has the right to keep his private activity not to be interfered with. Right to know, also called as right to learn the truth or right to know the truth, is a private rights which means that natural man has the maximum freedom to learn all sorts of message he want to know.