Session I.
To Protect the Human Genome---The Universal Declaration
on Human Genome and Human Rights
The Declaration, adopted by General Conference
of UNESCO on 11 Nov. 1997 and endorsed by UN General Assembly
on 9 Dec., is the first international document specifically
addressing the human genome research and its related ethical
issues. The principles set out in The Declaration will be
the foundation for discussions at all the sessions of this
workshop.
The discussions at this session will focus on the primary
task of The Declaration - To protect the human genome. What
are the definitions of the human genome? What realistic
risks is the human genome facing? Who are responsible for
the protection of the human genome? How to efficiently protect
the human genome?
Reference:
The Universal Declaration on Human Genome & Human Right
Session II:
Human Genome Research and Global Harmony
The completion of the human genome "working draft"
deserves world-wide celebration. The Human Genome Project
(HGP) has set up a brilliant model for international collaboration.
It has led to an explosion of our knowledge about life and
ourselves, and has had its great impacts on almost every
aspect of our society and the world.
Everybody is excited by the progress. Nobody would not
be concerned of such a question: is it likely that the HGP,
like some other advances in the history of science, could
bring more harm than good to the world? Nothing would be
more important than the global harmony which can only be
realised by the combined efforts by us all in both the developed
and developing countries.
The most important and urgent issue to debate on ELSI
related to human genome research, in the global perspective,
could be the equal and free access by all to the basic information
about the human genome. It has been written in the statements
by administrations of many countries, in the G8 Submit Statement,
as well as in the UN Millennium Statement. But how to guarantee
that the human genome can be owned by all, done by all,
and shared by all? What sorts of roles could the developing
countries, like China, play? What further important contributions
could we expect from the developed countries?
The second issue in this session would be how to share
the benefits from the exploration of the genetic resources
in nature, in both the developed and developing countries.
It is obviously not a simple issue like "illegal or
unreasonable", "opening or protection", "collaboration
or competition", "assistance or exploitation",
etc. It is related to the common challenges to all countries:
peace and sustainable development of the world.
References:
1. Towards Free Access To Human Genome Data, Paris, 29 November
2000
2. 关于出席UNESCO国际生物伦理委员会（IBC）"生命科学领域北-南合作工作小组会议"及争取UNESCO"关于人
类基因组基本信息免费共享的声明"的经过的汇报
3. The 2nd Proposal to the 6th Session of IBC,12 Oct,1999
4. Joint Statement by President Clinton and Prime Minster
Tony Blair of the U.K.
5. An Agenda Proposal to Working Group Meeting on North-South
Co-operation in the Field of life Sciences,IBC,31 March,2000
6. Report of the IBC on Solidarity and International Co-operation
between Developed and Developing Countries concerning
the Human Genome
7. Interim Measures for the Administration of Human Genetic
Resources ,10 June 1998
8. 国际人类基因组组织（HUGO）伦理委员会关于利益分享的声明
9. Human Research Subject Protection in China , November
2000
10. Celera Acquires Equity in Shanghai Genecore Biotechnologies
Session III:
Human Genes and Gene Patenting.
Is human gene money? A good question per se: human genes
and money. Money brings all the problems, but nothing can
be done without money. Now the problems have been doubled
by human genes plus money. What would be your feelings when
you are charged for "gene royalty" if your genes
need testing?
No IP (intellectual property) protection, no progress
in science or economy, nor in life sciences or bio-industry,
in either developed or developing countries. "Everything
under the sun is made by man" and can be patented if
you are smart enough. If not, don't worry. Buy more machines
and computers to produce patents at the speed of thousands
a day with the human genes which belongs to everybody or
nobody. Fortunately everybody is not equally smart in this
way. How can we be smart enough to deal with such an issue
if we think of its long-term and world-wide impacts by gene
patenting?
Is there any difference between human genes and other
chemical components? Is human gene patenting a pure "legal"
or "criterion" issue which should be decided,
or already decided, only by experts, attorneys, or the relevant
authorities?
Whether you like it or not, all the human genes will be
patented some day because all the human genes will be found
to have their "utilities" early or sooner. But
is there still a room for a debate on this issue if it is
related to ethics which should be further discussed by the
laymen and the public? Take the "last" opportunity
to express your ideas for, or against, human gene patenting.
If no, why? If yes, how?
References:
1. Intellectual Property In the Field of the Human Genome,30
January -1st February 2001-
2. The Race to Buy Life, 15 November 2000
3. An Example of the Negative Impact of Gene Patenting on
Consumers : The case of the gene patent for Canavan
disease
4. Mexican Bean Biopiracy,24 January 2000
5. USPTO:Guidelines for Examination of Patent Applications
6. 试论中国对生物技术的专利保护
Session IV.
Human Gene Research and Human Dignity
Now we hear more and more: "What we are
doing is studying your genes'! "What we need is your
blood"! "What we are using to deal with your problem
is the information we get from your genes and the tool made
from genes"!… Where am I, where are we? What is mine?
What are ours?
Yes, we have to seriously discuss what MY rights are and
how to protect MY dignity. This session will have the widest
spectrum to debate with emphasis on the informed consent
for either a donor of genetic materials or a client to be
genetically "manipulated", and on the confidentiality
of the genetic information, on the ethical issues related
to possible application of genetic information to insurance,
employment, and social security, etc. Still: If no, why?
If yes, how?
We shall also discuss about the rights to know or the
rights not to know, the new challenges concerning relationship
between personal choices and responsibility for our society
and its future. We may discuss whether there are such things
as "good genes" or "bad genes", whether
somebody is more or less equal than, or superior or inferior
to, others because of their genes, even though we all agree
with that everybody is equal. Perhaps we would look back
to the ideological reasons, such as Social Darwinism and
eugenics, for the two world wars and learn what we haven't
learned yet from the history.
Of course we will discuss whether there is any difference
in the rights of a donor in a developed country and in a
developing country in the eyes of a well-educated person
from the developed country. We have invited our colleagues
who have set up brilliant examples for us in international
collaborations following the internationally acknowledged
principles related to gene research. Finally we would discuss
whether we need a sort of principles or guidelines, and
whether a system to implement these principles in a developing
country, like China, is necessary. If no, why? If yes, how?
References:
1. World Medical Association Declaration of Helsinki
2. Work Plan for the Ethical, Legal and Social Implications
of Genomics,March 2001
3. Ethical ,Legal, and Social Implications of Human Genetics
and Genomic Research ,22nd Sept 2000
4. ELSI COMMITTEE HUMAN GENOME PROJECT IN CHINA ,4th Nov
2000
5. 生命伦理学联合会议会议纪要，2000年12月2日
6. 第18届国际遗传学大会优生学总结
7. 中华人民共和国母婴保健法
Law of the People's Republic of China on Maternal and
Infant Health Care
8. 母婴保健法的修改意见
9. HUGO伦理委员会：关于DNA取样控制和获得的声明
10. 人类基因组研究与遗传学的历史教训
11. Harvard and China Probe Disease Genes
12. 科学时报：为了全人类的健康中国医学街与哈佛大学合作研究获阶段性成果，1999年9月4日
13. Harard-affiliated gene studies in China face federal
inquiry
14. The Asian Wall Street Journal ,14th December 2000
15. In Rural China -Washington Post, 20 December 2000
16. 在中国农村，有丰富的基因母矿
17. About Xu Xiping's Research
Session V:
Gene Panic or Gene Peril?--- Ethical issues related
to biosafety
We have eaten "genes" since the dawn of humanity,
but now we are paralyzed by the "new genes" in
our daily food on the dining table. Are these "new
genes" poisonous to ourselves and/or to our "relatives",
or other friendly living things, in nature? How to relocate
our positions in nature based on the updated knowledge about
the genes of all living things including ourselves?
Furthermore, we may necessarily discuss about how many
hundreds or thousands of years man should live, and how
many clones or copies of an individual person would be the
proper number, as well as the ethical issues raised by the
use of embryo stem cells and all other emerging new technologies.
Again: If no, why? If yes, how?
Perhaps we may discuss about something we don't want to
see: Ecological or biological warfare, or other non-peaceful
application of genes, that are the real catastrophes to
the world. If there could be, how far? We have all the reasons
to be optimistic about the future just because we are alerted
enough and have taken substantial measures to prevent it
from happening before it is too late.
From big to small, perhaps we may be joking about how
to play God by ourselves with the knowledge which only God
had before. What are such things as a "Nobel Laureates'
Sperm Bank" or "notable sperm bank" or "gene
nutrients"? Are they related to ethics? If yes, why?
If no, how?
References :
1. The Use of Emgryonic Stem Cell In Therapeutic Research,30
October 2000
2. Declaration on Science and the Use of Scientific knowledge
,1July 1999
3. HUGO关于遗传研究正当行为的声明
4. Cloning in Human Health
5. China's Principles and Standing Pointson Biological Cloning
,march,1998
6. HUGO伦理委员会关于克隆的声明
7. Colombia Considers Fungus As Tool Against Coca,Poppies
Session VI.
Genes and Us--- Education and dissemination of bioethical
principles
The discussions at our workshop will not be
limited by the titles of these six sessions, the topics
we are going to discuss will not be limited by the items
listed for each session. All of these extremely interesting
issues are related to each member of our society. Let come
to the final session: Genes and us.
This session will be joined by all non-geneticists, for
examples, officers in all the relevant authorities and administrations,
journalists, teachers and other educators, experts in exhibition
and other science education, as well as the clinicians.
Surely geneticists are still equally welcome. How to let
more people, and more kids, know more about genes and the
related ethical issues? How to raise the sense of everybody
to protect her/his genome and take the best care of her/his
genes? How to guarantee the rights to know more about the
ongoing research, especially publicly funded projects related
to genes, and the rights to participate in the ethical discussions?
Know more about our genes, know more about ourselves,
know more about the gene-related ethical issues. It is the
curiosity, interest, obligation and responsibility of the
common citizens of modern society, all the people in all
professions, as well as the policy-makers.
Referece:
Education in Bioethics
