Ethical Issues Trouble Human Genome Researchers
Reuters Online Service
Freitag, 7. April 2000 20:51:00
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By Allan Dowd
VANCOUVER, British Columbia (Reuters) - Genetic researchers,
poised to complete the first version of the basic blueprint to
the human body, are still wrestling with the social questions
that arise from the information being discovered.
International scientists who have collaborated in the Human
Genome Organization (HUGO) will gather in Vancouver Sunday to
exchange recent research findings that are producing new
discoveries at a breathtaking pace.
The group's leaders hope the more than 600 researchers
expected to gather for the three-day conference will also
advance the difficult ethical debate over how the benefits of
the scientific knowledge should be shared.
"I think we are at a crucial stage in terms of defining
some of those principles ... at least engaging many different
parties in that debate," said Dr. Michael Hayden of the
University of British Columbia.
President Clinton and British Prime Minister Tony Blair put
the ethical issue of human gene mapping in the public spotlight
last month with a joint declaration that scientists should have
free access to the basic information being developed.
Their joint statement was warmly received by many
scientists.
"From the world's point of view, it's very important
because now, even at their level, (world leaders) recognize the
importance of benefit sharing," said Dr. Lap-Chee Tsui, a
Canadian scientist who will chair Human Genome Meeting 2000.
But while there is general agreement among scientists that
the basic genomic blueprint should be freely available, there is
disagreement on issues such as how quickly it should enter the
public domain.
The Human Genome Project, a public alliance of 16
institutions, has been racing with several private companies --
such as Celera Genomics (CRA.N) -- to complete a human DNA map,
the basic biological data that forms a person.
Celera announced Thursday it had finished the first step of
sequencing the genes of one person. The U.S. company plans to
use the genes of five different people to make up a final genome
sequence, and then sell information from its database.
Leaders of the Human Genome Project have said they hope to
finish a "working draft" that will include 90 percent of the
human DNA sequence by late May or early June, and have a final
version ready on or before 2003. Its information goes directly
to the public domain as it is collected.
Knowing the layout of the human genome should aid medical
researchers in finding the medical causes of many diseases
ranging from diabetes to cancer.
"Genomics is really the basic tool to study biology," said
Tsui of Toronto's renowned Hospital for Sick Children.
The effort has led to a myriad of ethical concerns, such as
whether genetic information about a person's likelihood to
contract a disease would lead to discrimination in employment or
health insurance.
Tsui declined to give details of a paper on benefit-sharing
to be presented during conference, but said it was modeled on
the HUGO's 1996 call for genetic research to follow principles
such as "the upholding of human dignity and freedom."
Scientists acknowledge the issue of patenting genetic
information will be difficult to resolve, because it is not
clear whether it would hinder or help future research.
"Suppose we were at the stage of human biology where we are
discovering all the parts of human anatomy and every time a bone
was discovered it was patented. Would that have an impact? It
might. It might not," said Dr. Michael Smith, who shared the
1993 Nobel Prize for chemistry.
The Human Genome Project and Celera have used different
research techniques to collect their information. Scientists
agree that sharing information would help both sides, but talks
on how to do that snagged earlier this year.
The public alliance began its work in 1989, and scientists
involved with it acknowledge that the competition with Celera
and other private companies may already have been beneficial by
making the project speed up its work.
"Initially, remember, we were talking about the human
genetic sequence being available in 2005. Then it was 2003. Now
it's 2001 and maybe even 2000," said Hayden.