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Introduction to the Project on Bioethics for Informed Choices - page 60 / 115

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590Challenges for Bioethics from Asia

Teaching about Genetic Privacy

Fu Jinhua .

Biology Department, Beijing Normal University Attached Middle School, Beijing, CHINA  

Email: fujinhua1980@sina.com, xinyue2468@sina.com

The developments in genetic engineering have raised a series of complex social problems, particularly those involving privacy. On 2002 June 26, scientists completed the map of the entire sequence of human genes. While this breakthrough holds great promise for improving medical treatment, it also presents unique challenges to the principles of privacy and discrimination. Mankind has become more open to perusal. If a person’s genetic information were to be disclosed, this would affect all aspects of his life. We teach genetic privacy and information as an elective course. The goal of this course is for students to learn not only the basics of genetics but also to be updated on the latest advances in genetic engineering. Further more, this course aims to stimulate the student interest in genetic engineering and cultivate their creativity as part of character building and ethical learning. Through student feedback, it’s easy to see that they have great enthusiasm in this subject.  And they thought this course is helpful in forming a scientific worldview. In the class, we mainly discussed in groups. In this way, the student can learn from others. They hope that bioethics will become more popular among middle school students.

The lecture material and outline

Because the students I had taught are second grade they had little general knowledge about genetics. I had to introduce some concepts to them in advance, especially DNA, Human genome project and genetic privacy. I showed pictures of the double-helix structure of DNA. About the human genome project I selected a piece of visual material about 3 minutes in length as an aid. This included that chromosomes are the carrier of genetic information. and we divide chromosomes into four types.

The developments in genetic engineering have raised a series of complex social problems, particularly those involving privacy. On 26 June 2002, scientists completed the map of the entire sequence of human genes. While this breakthrough holds great promise for improving medical treatment, It also presents unique challenges to the principles of privacy and discrimination. Humankind has become more open to perusal. If a person’s genetic information was disclosed, this would affect all aspects of his life.

Genetic privacy was introduced through the right of privacy, a kind of civil right which means that citizen has the right to keep his own data unknown by other persons and has the right to keep his private activity not to be interfered with. In this part, I prepared some questions which were supplied by the textbook.

Question 1: Would you like to know your genes and at what stage in life would you undergo genetic testing ?

Question 2: Who should know your genetic information?

Then we discuss these questions from four aspects: marriage, childbearing, employment, and insurance.

The first: marriage. Both male and female take medical examinations before they get married. And they have the right to know each other's results. So the contradiction arose between right to know and right of privacy. The right to know, also called as right to learn the truth or right to know the truth, is a private right which means that natural man has the maximum freedom to learn all sorts of data he wants to know.

The second: childbearing. A couple wants to have a healthy baby. But something miserable always happened in our life. I take some photos of a girl with a single-gene disease and  a boy with a chromosomal abnormality for example.

The third :employment. Discrimination in employment: The growth of genetic testing

. pp. 590-591 in Macer, DRJ., ed., "Challenges for Bioethics from Asia" (Eubios Ethics Institute, 2004).

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