Genome project, 3 agendas, and many spin-offs

Fri, 3 Mar 1995 11:48:25 -0500

In reference to the most recent posting from Mike Lieber I would like to
reply. I understand and concur with his concerns about the Genome Diversity
Project and to the wider concerns of the Genome Project as a whole. However,
I object to the notion that there is a lack of political or ethical
considerations amongst the researchers within these respective projects.

While I am not directly a part of either project I indirectly do research
that is tied to both. This is looking at genes for specific diseases and
genetic conditions that have significant impact on indigenous as well as
non-indigenous populations. (Though I'm not quite sure what a non-indigenous
population would be).

In all ways we strive to respect to the utmost the privacy and political
concerns of the people that we enlist in our studies. This is done by
explaining, in detail, the purpose of the project and any risks or benefits
the study may have to the individual, group, or society at large. If there is
a tribal organization either Native American or from any other country tribal
leaders and elders are consulted first (the wonders of the Internet) and any
concerns or objections are addressed or the project is abandoned with that
particular group.

Yes, there have been excesses in the past. One needs only to look at the
sickle cell screening fiasco of the '70's to see that but bioethics is at
least trying to catch up to the technology and hopefully will continue to do

The real fear is that we may be tampering with genes and be able to transform
humans into something we were never intended to be is a fear that should be
addressed but may never come to pass. We have been doing gene experimentation
on animals and plants since the beginning of agriculture and animal husbandry
and arguably have done a fair job of messing things up in those terms only
slightly. Genetic alterations may allow us to treat diseases, prevent birth
defects, and improve agriculture and animal production without further
messing up our environment. I find it hard to believe anyone would want to
return to a time when children died of infections that are now easily
treatable nor would they wish the pain of genetic disease that could be
alleviated. The Genome project for the first time has allocated funds for the
ELSIE Project which is pruely ethical in nature. Hopefully with this input
and a greater sensitivity to political concerns advances can be made that
will not jeopordize us as people yet allow us to improve the good of
Lawrence G. Leichtman, M.D. Genetics Division Eastern Virginia Medical
School, Research Section Operation Smile International