人類遺傳學家的社會責任

The Social Responsibility of Human Geneticists

Abstract

LANGUAGE NOTE | Document text in Chinese; abstract also in English.

作者首先指出科學是一把雙刃劍，科學家是鑄造和掌握這把雙刃劍的人。因比有責任去關注對科學技術的正當使用，使之有益於人類。中國人類遺傳學家當前有四項責任：加速研究並應用於衛生保健；最大限度減少／避免遺傳信息和保護措施的誤用／濫用，其中尤其是要堅持知情同意／知情選擇和保護隱私原則；積極參與ELSI爭論；以及教育臨床醫生、公眾和自己。他強調，更重要的是我們必須充分地認識到通過遺傳學措施提供給特定個人的具體幫助與“改良人口質量”的本質區別。我們必須探索隱藏在30億城基對內的秘密，我們人類和我們社會一直是依靠這些城基進化和發展的。我們必須努力工作來更新我們關於我們基因的知識，並應用這些知識於人民的衛生保健和我們的社會。

The advances of the world-wide Human Genome Project and other research in this field have led to the explosion of knowledge about our genes which are so widely and deeply involved in our lives. The knowledge and related technologies have already made a great impact on the whole society.

Science is only good when it is applied to the society in a proper way. Science has proved itself a double-edged sword. The sword is in the hands of the scientists who should be closely observed by the public. As human geneticists, we should be the best to know that genes and their related technologies would be the most dangerous if they were abused or misused, while we expect all good from them. The reason is very simple: we are dealing with the nature and essence of ourselves. It is the moral, professional, and social responsibility for us, human geneticists, to pay serious attention to the ethical, legal and social issues (ELSI) related to the genes which we are playing with, to make sure that the knowledge and technologies about the genes will serve the people, instead of harm to the society presently and in the future.

I would like here to propose four responsibilities for discussion with my colleagues both home and abroad, even my topics are limited to my own country.

1. To develop research and apply genetic knowledge and technologies to health care

2. To minimize/avoid the abuse/misuse of genetic information and measures by our own common sense and moral responsibility
a. The 'demand-driven effect' of the urgent need for genetic services
b. The 'amplification effect' by the huge population and enormously large number of clients
c. The 'historic lessons'

I here try to list two principles which, I think, have been widely accepted as common senses for people like us, as well as our moral responsibility in our career.

a. The principle of 'informed choice and informed consent'
The first application of this principle is to research, for example, when we take a blood sample or other gene tic material from a donor. The second application of this principle is to offer counselling or diagnostic or even therapeutic measures. Counselling -is non-directive, because finally the client should make the 'informed choice' by himself/herself, without any threat or pressure presently and afterwards, and sign the 'informed consent form' before a genetic measure is offered. It is al so simply common sense that we cannot do everything at the request of a client, e.g. sex determination of a fetus, or cloning of herself/himself. Anything that is not allowed to be done by law in the developed countries will absolutely not be allowed to be done in China. China will never be the test field to which some unethical experiments will be transferred. China will never be the place to host any 'Jurassic Park'.

b. The principle of privacy
All human geneticists and clinicians who are involved in genetic services, no matter how, when or where they were trained, should have the common sense in their career about how to protect the privacy of patients. Genetic information Is generally related to their health in the whole life and fate in the society, and Is the ultimate privacy of a citizen. No genetic information can be released to any other individual, any organization, or any department of the authorities, without the 'informed consent' and specified legal procedures. Needless to say it is not allowed to be released to the places related to dignity, marriage, employment, insurance of the clients. The client's 'right not to know' should also be respected.

3. To debate on the ELSI
In the past years, through the effort of Chinese ethicists and geneticists, the discussions about bioethics have started. Three good examples arc public debates on cloning of humans and on the protection of genetic resources, as well as the recent serious debate on the EL SI at the 18th International Conference of Genetics, August, 1998, Beijing.

4. To educate the clinicians, the public and ourselves
It is urgent and extremely important to educate the clinicians, the public and, at the same time, ourselves. The Chinese Human Genome Project will include an education programme. The education of an army of clinicians in different medical branches who are directly involved in genetic service every day is even more important and urgent. It is they who are dealing with the genes related to human lives and the society and waving the 'double-edged swords'. It is they who are applying the genetic knowledge and measures to the people. It is they who are given the power to issue the 'certificate of marriage' or 'certificate of permission to give birth'. It is they who are responsible for the present and future society by avoiding or minimizing the abuse or misuse of genetic information or measures. The educators should be educated first. We have to soberly realize that we still know so little about our genes, the direct and observable effects of the genetic measures and those long-term and unobservable and unpredictable effects on the human society and the future. We are even unable to clearly distinguish 'good genes' from 'bad genes', 'normal genome' from abnormal or 'disease genome'. We don't understand the potential positive significance of the 'bad alleles' present in our bodies and in the population. We don't know the nature of natural gene therapy of the genetic diseases. Most importantly, we have to fully realize the substantial differences between specific help offered to a specific individual and 'improvement of the population quality' by means of genetic measures. We have to explore the secrets hidden in the 3 billion base pairs on which we human beings have been evolving and our society is developing. We have to work very hard to update our knowledge about our genes and apply it to the health care of the people and our society.

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