The HGD Project remains in its planning stages. Its general
structure has been set but many of the details (and its funding)
remain up in the air. Apart from further organizational activities,
not very much concrete has happened in the past few months.
Last January, the Human Genome Organization, an international
non-profit group of scientists that attempts to coordinate research
on the human genome, "adopted" the HGD Project. It appointed a three
person subcommittee to serve as its liaisons with the Project.
The Project has an international executive committee, charged with
coordinating the Project, and a number of self-organized regional
committees. Regional committees are operating for North America and
Europe. I understand that such committees are in formation by
scientists in South America, Africa, Southeast Asia/Australia/the
Pacific, China, and the Indian Subcontinent, and I may be missing a
few. As far as I know, only the European Committee has been very
active thus far. It, I believe, has received some funding to set up
regional laboratories in Europe.
The North American Committee held its first meeting last January.
It adopted a set of bylaws, discussed plans for additional
foundation work, and talked about funding possibilites. The
Committee now has thirteen fairly diverse members. We include six
geneticists, four anthropologists, two lawyers, and a sociologist,
among whom there are two Native Americans, one African American, two
Canadians, and four women. The Committee has sought some funding
from a private foundation for preliminary work, including ethical
issues and increased public communications. The Committee is in the
process of seeking funds from the federal government for other
preliminary work. Neither the North American Committee nor, as far
as I know, any other regional committee is currently collecting or
preserving DNA samples.
I chair the ethics subcommittee of the North American Committee.
That subcommittee is still under formation (and has no funding), but
if we get funding for some preliminary ethics work, it will be fully
staffed, with members from inside and outside the North American
Committee. Among the projects I would like the subcommittee to
undertake soon are the creation of model protocol, discussing
ethical, legal, and practical issues in collecting DNA, and a
workshop on the best methods to protect the rights of sampled
populations in the collected DNA. I expect both these projects to
involve a broad range of participants from within the Project, from
populations that might be sampled, and from non-governmental
organizations interested in these issues. And I further expect both
the final products and drafts from those projects to be widely
available for comment.
It is also my strong hope that funding for communications will make
it possible for members of the North American Committee to meet
widely with interested individuals and groups. I have heard at
least preliminary expressions of interest in the Project having
representatives at a couple of Native American events this summer.
If you or a group you belong to would be interested in meeting with
representatives of the North American Committee, please contact me
directly and I'll see what we can do.
Those of you who have read my earlier posts about this Project know
that I think it is a tremendously exciting change to learn more
about the human family. I also think that it is a great opportunity
to do science right, with the studied populations as partners in the
research rather than as subjects of it. I am hopeful that we will
be able increasingly to create those partnerships as planning
continues.
Those of you who haven't read my earlier postings about this Project
may wonder what all this has been about. If you would like further
information about the substance of the Project, please contact me
directly at henry.greely@forsythe.stanford.edu. One additional
source of information is a recently published report of hearings the
Senate Government Activities Committee held on the Project in April
1993. These hearings featured testimony from two of the organizers
of the Project, Prof. Mary-Claire King and Prof. Luca
Cavalli-Sforza, as well as from various government officials.