From: Student Pugwash USA <uspugwash@igc.apc.org>
Newsgroups: alt.org.pugwash
Date: 14 Dec 92 11:51 PST
Subject: Re: *Tough Questions: Fall 92 News
Nf-ID: #R:cdp:1758700030:cdp:1758700038:000:6109
Nf-From: cdp.UUCP!uspugwash    Dec 14 11:51:00 1992


Tough Questions - Conference Issue 1992

ETHICS AND THE USE OF GENETIC INFORMATION

INTRODUCTION
     Genetic technology has made astounding progress in the last 15 
years, and we can only speculate where we will be in the next 15. 
The human genome endeavor, a concerted international effort, will 
attempt to map all 50 to 100 thousand human genes to their 
chromosomal locations. Another phase of the project will determine 
the exact sequence - the text, if you will - of these genes. The 
stated impetus of a project of this magnitude is to prevent and 
hopefully treat some of the 4,000 already known genetic disorders 
which afflict humanity. The information to be gained will lift a 
veil of uncertainty from our collective identity, but we must be wary 
of this technology. Only now do we have the technology to delve into 
the molecular structure of our human inheritance and try to shed 
light on questions of human nature. Given these ideas, we, the 
members of the Ethics and the Use of Genetic Information  working 
group, have prepared a statement on our recommendations for the use 
of the information gained from this endeavor.

PREAMBLE
     Modern genetic research will open many new vistas and create 
many new challenges. The greater knowledge of humankindUs genes can 
be a window into important facets of our inner self and of all 
humanity.  The human genome endeavor should be conducted in a manner 
that will benefit all humanity, and we should be well prepared to 
deal responsibly and ethically with the information that will be 
produced by this endeavor. However, we must recognize that our genes 
are not the sole determinant of our being; we are social beings, 
inextricably a product of our environment and behavior.

     In particular, our working group perceived a need for 
increasing public awareness and understanding of the human genome 
endeavor in particular and of science in general. People of all 
disciplines and backgrounds need to become involved in and welcomed 
into the scientific process. Science in general can and must become 
more democratic. We call upon scientists to provide easily 
understood and accessible information. We also call upon the public 
to better educate themselves on these issues in order to make 
informed decisions.

     To encourage the beneficial uses and applications, and to 
discourage intentional or accidental abuse, misdirection, or 
misapplication of genetic research, we, the members of the Genetic 
Information Working Group , believe that the following guidelines 
should be adopted regarding the human genome endeavor and similar 
applications of genetic technology.

     I. All information resulting from the human genome endeavor, 
except that which discloses an individualUs genetic information, 
should be public property and be available to all nations and people. 
All nations that possess the technological capacity to assist with 
the genome endeavor and that stand to benefit from the information 
have a responsibility to participate (financially and with human, 
material, and scientific resources) to the extent they are capable. 

     II. At its current funding rate, the human genome endeavor will 
produce information of fundamental importance at a rapid rate and 
with great potential for both use and abuse. It is the obligation of 
the global community to develop in parallel the ethical, legal, 
social, economic, and political tools, policies, principles, and 
procedures necessary to use this information to the benefit of 
humanity, and in an ethically sound manner. In addition, this 
parallel effort must go beyond research to include broad dialogue 
and public participation.

     III. The priorities of the human genome endeavor (and of 
publicly supported science in general) should focus on the needs of 
the global community. In particular, priorities shall not be 
determined by racial, gender, or discriminatory preferences.

     IV. The results of the human genome endeavor shall be used to 
the benefit of all. Great care shall be taken that the results are 
not used to the detriment of any people, based on race, ethnic, or 
gender groups or against people who do not have economic, racial, or 
political power.

     V. All individuals associated with the human genome endeavor 
have an on-going responsibility (which is not terminated by the 
completion of their particular involvement in specific studies) to 
ensure that appropriate steps are taken so that the information 
obtained from the effort is used in an ethical and responsible 
manner. The human genome endeavor may give humanity new appreciation 
of our diversity; it is critical that this information not be used 
to alter that. 

     VI. No individualUs genome should be typed as their genetic 
information without their prior consent or a court order. An 
individualUs identified genetic information should not be disclosed 
to anyone without that personUs prior written consent, except by 
court order.

     VII. Any identification of an individual based on genetic 
techniques must be accompanied by an explicit statement regarding 
the known uncertainty of that identification. Any advice, counseling 
or proposed medical intervention based on genetic evaluation should 
be preceded by an explicit statement regarding the known uncertainty 
of that evaluation. 

     VIII. Attempts to use predictive genetic technologies in 
decisions regarding access to and equity of education, employment 
and insurance are especially subject to misinterpretation, 
misunderstanding, misuse, or abuse. If allowed, the use of 
predictive technologies in these areas requires regulation and 
monitoring sufficient to prevent misuse of information and to 
safeguard human dignity and human rights.

CONCLUSION
     The exchange of information and dialogue are essential 
prerequisites for the development of mutual trust and respect, but 
only the sharing of our inner selves, our hopes, and our fears can 
establish the basis for truly working together to understand and 
solve the fundamental problems facing humanity.