The Human Face of Science

MikeBGene@aol.com
Thu, 23 Sep 1999 23:50:15 EDT

Speaking of Wexler's role in mapping the Huntington's disease gene,
Kevin wrote:

>Had she not been in the right place at the time, someone else would have
>stepped in to do the work, and we would be just as far along as we are now.
>If you knew more about how science worked than simply from a work-study
>program you would realize that.

I don't think science works like this. I think there are many "intangibles"
to science. I've previously explained why I think Wexler's passion was
important in mapping the HD gene back in the early 80s. But there is more.
For Wexler, and her colleagues, to be successful, they needed a robust
pedigree. They were able to obtain such a pedigree from an extended
multigenerational family in Venezuella. Furthermore, they were able to
obtain the necessary tissue samples through skin biopsies (obtained
from people, many who had never had any previous contact with modern
medicine).

Wexler speaks of this experience and, I think, demonstrates the
importance of the "human touch" behind science. She writes:

"I felt it was important for the Venezuelan family members to know
that Huntington's disease was also in my family and in many other
families in the United States but that our families were not large
enough to offer the gift to research that their family was capable
of providing. We needed their help to find a cure. At the that time
we were doing skin biopsies, which I also had done for research.
The family members were dubious of my story until I pointed
out my skin biopsy scar and my wonderful colleague and friend,
Fidela Gomez, a Florida nurse, grabbed my arm and dragged
me around the room shouting, "She has the mark, she has the
mark!" MY MARK AND I BECAME SOMETHING OF A
PASSPORT FOR OUR RESEARCH TEAM AND ITS
ACTIVITIES." (emphasis added)

Now, if you ponder this account, I think it becomes clear
that it simply isn't true that "had she not been in the right place at
the time, someone else would have stepped in to do the work, and
we would be just as far along as we are now." If it wasn't
for Wexler, there is no reason to think anyone else would have
made the sacrifice of spending so much time and energy in
Venezuella (and let's not forget her sense of compassion and
sensitivity). And if, by chance, someone did take her place, would
they too have "the mark" that opened the door for her research?
I don't think so.

Had Wexler not been at risk for HD, it is unlikely she
would have the same passion or "the mark." It is thus
unlikely that anyone else would have successfully obtained
the pedigree and tissue samples from this extended Venezuelan
family and thus it is unlikely that "we would be just as far along
as we are now." Nancy Wexler deserves her place in history.
Her contributions were *her* contributions. She did not simply
play the "scientist" role that could have been played by any
other scientist. She brought to science the uniqueness of
herself. The passion and personal history that makes
Nancy who she is is behind the reason we are indeed as
far along as we are now.

But why stick with Wexler when we have a scientist on
this list? In one message, Wesley E. wrote to me:

>OK. In some of the work I'm collaborating on now, we have an
>extremely complex equipment setup that involves high-speed
>video, endoscopes, pressure catheters, and hydrophones. Some
>of our colleagues may have believed that nothing would come of
>our approach. Others may not have pursued it due to the
>technical difficulty of the task. We keep reminding ourselves
>that if it were easy, someone else would already have done it.

Why is Wesley doing this research? If he decides not to,
then someone else will simply replace him. It doesn't
matter to science if Wexley does this research as he is
completely replaceable and science will get where it
will get with or without him. Is that not what Kevin's
point implies?

Mike