Genome issues

Date: Thu Jun 22 2000 - 22:15:22 MDT

I had recorded the Charlie Rose show from Tuesday night and finally
watched it. It was an interview with Dr. Francis Collins, head of the
Human Genome Project.

Collins comes off as an enthusiastic and energetic guy in this wide
ranging interview. However he is rather conventional ethically, a
religious man, and this seemed to color some of his responses.

Rose pressed him on whether it would be possible to use the information
from the genome to engineer a "super race". Collins offered as an example
the modification of the genome to make someone who was intelligent,
strong, good looking, and so on.

He said that this was not likely to be possible. First, many of these
factors are largely (50%) environmental. Second, most of these are coded
by many different genes interacting in a complex way. It is unlikely
that people would be successful in making modifications that come out
the way they hope.

My reaction was that he was spinning this the way he wanted. At best
these considerations will delay this outcome.

Rose also asked whether genomic information would be helpful in targetting
some kind of genetic weapon against "certain groups." Collins said that
this would probably not work, because racial groups have almost as much
variation within themselves as between races.

I was also skeptical about this answer. I suspect a sufficiently
motivated racial terrorist could identify some gene complex which would
be found almost entirely among members of a given race. Not all people
who are considered members of that race would have it, but it would not
be found much at all among other groups. As a trivial example, there
is something genetic that makes Africans predisposed to have dark skin.
Theoretically the presence of those genetic factors could trigger some
kind of artificial disease.

They also talked about the problem of genetic information being used
to discriminate against people with bad genomes by insurance companies
or employers. Collins said that there should be a law to prevent this.

I wish we could have a system similar to AIDS tests, where you can be
tested anonymously. The Internet would be a perfect medium for getting
an objective and anonymous analysis of your genome.

As with AIDS tests, if you do turn out to have treatable problems then it
is probably not practical to retain anonymity. If your insurance company
is paying for the therapy which inhibits some diseases to which you have
a genetic predisposition, they're going to find this out about you. So the
question would be how often this would happen.

You could envision a system where there was a sort of "minimum
disclosure". You'd get your genome analyzed anonymously, but get an
official certificate that you could use to selectively reveal certain
parts. When a new treatment becomes available that will benefit you,
you reveal that part of your genome and you can get treated. You don't
give away information on problems until there is a treatment for them,
and you use the net to stay informed about new treatments.

Another issue that Collins discussed was the possibility of human cloning.
He hopes it never happens, for ethical reasons, but didn't go into much
detail. He also said that he hopes that germ line engineering never
happens, apparently for the same reasons. It's not clear whether he was
worried about accidents causing harm to unborn victims, or whether it
was a reflection of his religious view and this would be too close to
"playing God".

At the end of the interview Rose asked Collins to try to imagine what it
would be like to look back from 100 years in the future, to consider what
discoveries and knowledge we might have by that time. Collins briefly
described the incredible advances in biology over the past 100 years,
and said that it was truly impossible to imagine what things would be
like 100 years from now. When you look at the curves and trends towards
increasing knowledge, it becomes impossible to predict more than about
20 years out, he said.

It's too bad he didn't take that next logical step, but I suppose his
religious views forbid it. Does he really think we are going to have
100 times more knowledge than today, but not use it? We won't modify
the germ line to eliminate problems and add enhancements? We won't make
changes which challenge the very definition of what it means to be human?

These tools are going to exist, and they will satisfy human needs that
go back thousands of years. Collins hopes that medical ethicists and
theologians will convince us not to use these tools, but (I suppose)
content ourselves with abstract admiration of all that we will know
about how the body works. Not very likely IMO.

It would have been nice to see a little more courage and vision at
this point. Perhaps the other episodes this week will look farther out.


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