Imagine knowing when you are young and healthy that you have a 50-50
chance of developing a progressive, degenerative brain disease that causes
uncontrolled movements, loss of memory and mental capacity, and severe emotional
problems. There is no treatment, only certain death. A genetic test would
reveal whether you will develop this deadly condition. Would you want to
know? Why or why not?
This is just one of the many dilemmas emerging from the new field of
DNA technology. As more and more tests are developed for genetic conditions
from breast cancer to obesity, chances are you or a loved one will be faced
with some difficult personal choices that can impact your health, insurance
and employment status, and right to privacy.
|In 1995, we asked Exploratorium visitors these and other related questions
during a special exhibition on genetics and the Human Genome Project. As
we were developing the exhibits for Diving Into the Gene Pool, we realized
early on that we couldn't simply focus on biotechnology, we also needed
to address the related social and ethical issues arising from advances in
genetic science. We wanted to put the human into the Human Genome Project.
The exhibition, funded by the Department of Energy, drew 178,000
visitors to the Exploratorium, including school children, tourists from
all over the world and members of our diverse Bay Area communities. The
show covered topics from molecular biology to human genetic inheritance
and included a resource and visitor feedback section, called Points of View.
Inside Points of View were stations where visitors could contemplate and
respond to different ethical scenarios. Each scenario presented an ethical
issue or case study and then asked three open-ended questions.
As we counted and read through these responses, we were overwhelmed by
the sheer quantity and thoughtfulness of the public's point of view. In
total, we collected nearly 5000 responses. The questions were worded so
that visitors could reply with a simple yes, no, or maybe. However, more
than half the participants (62%) wrote detailed answers, elaborating on
their own philosophies.
|| One of the cases, "George and Mr. F," deals with a 21-year-old
man and his 42-year-old father who is at 50% risk of developing Huntington's
Disease, a debilitating brain disease that is passed from parent to offspring.
The son requests genetic testing, but the father does not want to know his
own status or that of his son.|
| This case study dealt with a son's right to know his status as a possible
carrier for Huntington's disease, and whether his right to know superseded
his father's wishes. Nearly all visitors (95%) thought the son did have
a right to know his own genetic status. A slightly smaller percentage (89%)
thought the father also had a right not to know. Most visitors thought the
son's right superseded the father's, but suggested that they should try
to work it out or at least find a way to keep the information secret. We
also asked visitors if they would want to be tested if they were in that
situation; well over half say they would want to be tested.
|| Another scenario,Brave New World, discussed gene therapy and genetic
enhancement and asked visitors to consider when and whether this technology
should be applied.|
| In the Brave New World scenario, we asked visitors whether they felt
scientists should alter germ cells (human egg and sperm) to cure a genetic
disease. Most people (68%) thought it was acceptable to use gene therapy
to cure diseases, while a small minority(12%) thought that parents should
be allowed to genetically enhance their offspring with traits such as intelligence
and tall stature.
One of the biggest lessons we learned from the Points of View exhibit
is that the Exploratorium can be a two-way classroom, where visitors inform
us as much as we inform them. The legal, ethical, and social issues coming
out of the Human Genome Project will not be answered in the isolated halls
of academia or by government bureaucracy. Instead, these critical issues
will require thoughtful feedback and consensus of the public at large. We
hope to continue asking these questions and giving our visitors a chance
to present their points of view. In the next issue of What's New, we'll
give the results of the remaining two case studies collected during Diving
Into The Gene Pool.
About the Author: Mary
Miller is Senior Science Writer at the Exploratorium and was on the
exhibition development team for Diving Into the Gene Pool.
Acknowledgments: This exhibit and resulting visitor data analysis
wouldn't have been possible without the help of many people. My colleagues
at the Exploratorium, Charles Carlson, Micah Garb, and Nik Walter, were
critical in designing and developing Diving Into the Gene Pool. Judith Benkendorf
(Georgetown University) and Jon Weil (U.C. Berkeley) provided case studies
and advice. Judith also helped analyze and write up the results. Barbara
Rogoff (U.C. Santa Cruz) provided guidance and her daughter, Valerie Magarian,
helped count visitor responses. Finally, Exploratorium volunteers Jay Aronson
and Victoria Chen spent many hours counting and analyzing data for this
article and a talk I gave last October for the annual meeting of the American
Society of Human Genetics.
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