Exploratorium Visitors Give Their Points of View

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.  Diving into the Gene Pool

 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.

 See the full text of George and Mr. F and the visitor responses  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.  Actual Visitor Responses to George and Mr. F
 See the full text of Brave New World and visitor responses  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.  Visitor responses to Brave New World

 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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