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"Looking Back, Looking Ahead"

Operation: The Human Genome Project

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OPERATION: HGP is an interactive exhibit that explores the many dimensions of the Human Genome Project (HGP). Formally begun in 1990, the HGP is an international, thirteen-year project in which researchers conduct an in-depth study of human genes and DNA. Initially designed to extend over a 15-year period, the project was shortened due to unexpected rapid advancements made by researchers, and is expected to be completed by 2003. Coordinated by the United States Department of Energy (DOE) and the National Institute of Health (NIH), the project's primary goals included:

  • identifying all of the estimated 80,000-100,000 genes in human DNA;
  • determining the sequences of the nearly 3 billion chemical bases of which DNA consists; and
  • addressing the ethical, legal, and social issues that may arise from HGP research and advancements.

As the project accelerated, researchers set yet another goal: to identify individual variations in the human genome. Scientists are currently working hard to accomplish these goals as more information is learned every day about the HGP.

Upon completion, the HGP will have a significant impact on science in the twenty-first century. Not only will the knowledge of one's own genetic makeup change the way we see ourselves, but it may alter the way others perceive us as well. For example, if it were known that someone had a 25 percent chance of developing cancer within the next five years, what would be the reaction of employers or insurance companies? Furthermore, how might the individual's outlook on life and understanding of oneself change? This scenario illustrates some of the negative aspects of genetic research, seen primarily in the ethical and social conflicts that coincide with the HGP. On the other hand, there are many advantages of the HGP, namely the early detection of potentially fatal genetic diseases. Recent advancements in the study of gene therapy options may make it possible for scientists to "cure" disorders such as muscular dystrophy or cystic fibrosis. Even if gene therapy is not available for a certain disease, background knowledge of one's genetic makeup can allow for preventative measures in the form of early treatment. In the end, the determination of the DNA sequences, identification of the 100,000 genes in DNA, and other discoveries related to the HGP will greatly influence the entire concept of human biology and have a profound impact on humanity as a whole.

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OPERATION HGP: THE EXHIBITION
The aspiration of OPERATION: HGP is to have visitors leave the exhibit somehow feeling connected to the information presented to them. Visitors are encouraged to explore the exhibition so that they can realize the relevance of the material seen, personalize it, and most important, be energized to continue learning about topics related to the HGP. Due to the serious nature of the topic, the exhibit appeals to mature museum visitors. It targets those ages 12 and over, and is not recommended for children eight and under. To have visitors get the most out of their OPERATION: HGP experience, guided tours are available, as are programs designed specifically for school groups (the exhibit layout is compatible with educational tours, and special facilities are available).

Operation: HGP - The Layout (Click to enlarge.)


OPERATION: HGP is arranged with a specific, intended path for museum visitors to follow. The exhibit is composed of three individual rooms, called pods, which branch off one central site, resembling a three-leaf clover. As visitors peruse the information presented in the exhibit, they will become more knowledgeable about the HGP. The information in each pod builds upon the knowledge gained from that of the previous pod. Visitors have random access to information within each pod, and will recognize thematic links and visual relationships through the general layout of the pod. Three main aspects of the HGP are addressed in the exhibit, each assigned to an individual pod: HGP background (Pod A), the benefits of HGP (Pod B), and the bioethical issues related to HGP research (Pod C).

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POD A: HGP BACKGROUND INFORMATION
In Pod A, visitors are introduced to the HGP through the presentation of fundamental concepts behind HGP.

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Pod A


Features:
Four television monitors with attached audio headphones are stationed along the eastern wall. Each television terminal transmits a different video clip of HGP-related facts (approximately three-and-a-half to five minutes long) narrated by experts in the field. One station will televise representatives from the United States Department of Energy (DOE) and the National Institute of Health (NIH) summarizing progress made with the HGP, and plans for the future. Another monitor will display HGP researchers speaking about their personal experiences working on the project. The third will show an interview with a physician and focus on his/her opinion of HGP and hypothesis on how it will affect the practice of medicine in years to come. The final terminal will broadcast snippets from an assortment of national news programs (i.e., ABC's World News Tonight with Peter Jennings, CBS's 60 Minutes, PBS's News Hour with Jim Lehrer, among others) addressing the recent advancements in HGP research.

The four main goals of HGP:

  1. Identifying all of the estimated 80,000-100,000 genes in human DNA.
  2. Determining the sequences of the nearly 3 billion chemical bases of which DNA consists.
  3. Addressing the ethical, legal, and social issues that arise from HGP research.
  4. Identifying individual variations in the human genome.

These goals are displayed individually on appealing, colorful banners that hang from the ceiling and are scattered throughout the pod. Each banner not only presents the goal, but it also briefly explains how researchers are working to achieve each of these objectives. For example, the banner dedicated to the sequencing of all the 3 billion chemical bases of human DNA will include information on how scientists take fragments of human DNA and attempt to map them to the precise position on the chromosome from which they are derived. Once mapped, these fragments are broken down into shorter pieces, thousands of bases long. Complex machines then stain the DNA with four different dyes that coincide with the four letters of the DNA alphabet. The banner would go into further depth, relaying facts about how the short DNA sequences are arranged to overlap each other, and the obstacles researchers face in trying to fully achieve this goal.

A wall-mounted display called "Back 2 Biology" lines the southern wall. This display will refamiliarize visitors with the basics of genetics: DNA, genes, chromosomes, and so on. They will be reminded, for instance, that a genome is composed of all the DNA and chromosomes in an organism, including its genes, which contain a complete set of instructions for making an organism, as well as the master blueprint for all cellular structures and activities for the lifetime of the cell and organism. A large picture of Watson and Crick working together in the lab as they begin to unravel the fundamental structure of DNA (circa 1953) will be present as a tribute to two of the pioneers in the field of genetics.

The northern wall exhibits a large, detailed timeline of the progress made by HGP researchers. It will begin in 1990 with the start of the HGP and follow the course of the project. It allows for additions, as research continually advances, and will frequently be updated by museum artists.

The center of Pod A features an upright, rotating cylindrical station entitled "Of Mice and Men." Here, the link between the biological makeup of laboratory mice and humans is explored, with the focus being on how genetically mutated mice are helping researchers conduct tests on genetic diseases. For instance, scientists have discovered that a crippling disorder affecting the muscles of mice is located on an X chromosome that corresponds to the X-linked Duchenne muscular dystrophy gene in humans, and it is known that the two genes produce proteins that function similarly in both species. Information of this kind, along with additional facts about the genetic parallelism between mice and humans, is presented at this station.

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POD B: BENEFITS OF THE HGP
In Pod B, visitors are presented with a closer look at the potential advantages related to HGP upon its completion.

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Pod B


Features:
A giant-sized poster mapping the location of specific genetic diseases on particular chromosomes covers the eastern wall of the pod.

The northern wall has four interactive stations where visitors get a firsthand glimpse of genetic diseases (the featured disease changes every two months, but a few examples include myotonic dystrophy, Huntington's disease, Alzheimer's disease, and familial breast cancer). Each setting has a digitally enhanced microscope displaying an animated, enlarged view of a single gene of the genetic disease. Each post also has an attached set of audio headphones with a brief narration describing the characteristics of the gene. For example, during October, Breast Cancer Awareness Month, visitors will hear general facts about familial breast cancer, statistics about how many women are affected by the fatal disease each year, as well as more specific information about the mutated BRCA1 gene that is associated with the cancer.

The westernmost side of this pod consists of an enclosed, miniature theater with the capacity to seat no more than 25 people at a time. Here, visitors will view an interesting 10-minute film on a projection screen, which examines potential applications of HGP research. The focus of the film is to alert visitors to the many fields that HGP research affects, including the following:
- MEDICINE: The emerging age of molecular medicine, characterized by immunotherapy techniques, gene therapy, and new types of drugs, will have a profound effect on the medical field in the future. Risk assessment will also be a potential benefit, as scientists will have a better understanding of the damage caused by exposure to radiation, carcinogens, and harmful chemicals.
- INDUSTRY: Microbial genomics (sequencing the genomes of bacteria) may prove to be useful in energy production and toxic-waste reduction, among other things.
- ANTHROPOLOGY AND BIOARCHAEOLOGY: Understanding human genomics will provide insight into the evolution of man and the common biology shared with all living organisms.
- DNA FORENSICS: At crime scenes, potential suspects could be identified based on matching DNA samples. This same procedure could clear the names of accused individuals who are indeed innocent.
- AGRICULTURE: A better understanding of plant and animal genomes allows for the possibility of crops that are resistant to disease, insects, and drought. Healthier, more productive livestock is another possible advantage in the field of agriculture.

The center of this pod features an upright, three-sided technology center, which guides visitors in imagining what life will be like in the future when the aforementioned benefits (listed above) are part of mainstream society.

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POD C: BIOETHICAL ISSUES RELATED TO HGP RESEARCH
In Pod C, visitors are exposed to the various bioethical concerns that go along with continued research on the HGP.

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Pod C


Features:
Unlike the two other pods, this pod is set up as a technology laboratory, with 35 individual computer stations set up with an interactive CD-ROM program that explores various ethical, legal, and social issues related to HGP, including:

Who owns and controls genetic information? (the privacy and confidentiality of genetic information)

Who should have access to genetic information and how will it be used?(fairness in the use of genetic information by insurers, employers, court systems, schools, adoption agencies, law enforcement, the military, etc.)

How does knowledge of one's genetic history affect an individual and society's perception of the individual?(psychological impact and discrimination due to one's genetic differences)

Who will have access to this expensive technology, and who will pay for the use?(fairness in access to genetic technology)

How will HGP affect the diversity of the gene pool? (the possibility of genetic enhancement using gene therapy, also known as "Design-a-Baby," to provide specific characteristics, such as brown eye color, that parents might want their child to have, but that does not involve treating a disease)

Should testing be performed when no treatment is available?

Do parents have the right to test their children for adult-onset diseases?

How are genetic tests regulated? (the need for standard measures in testing procedures)

Other ethical questions will be added as they arise. The key concept behind the CD-ROM program is to present visitors with problem-solving situations where they are asked to role-play. For instance, one might be asked to play the role of an insurance agent, and have to decide whether or not to provide coverage for a person who knows that he or she may develop Type 2 diabetes within five years. One might ask, "Is it a smart business move to cover this person? Should this person's rates be higher, since a high-risk disease is anticipated? Should this knowledge affect the coverage at all?" There are no right or wrong answers. This activity is only intended to assist in contemplating these ideas, to spark deep thought concerning all the moral issues involved in HGP.

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CENTER DISPLAY

Features:
The center of the OPERATION: HGP exhibit showcases a giant-sized 3-D model of chromosome 22--the only chromosome completely mapped--displaying the exact chemical letters that encode the genes located on the chromosomes.

When visitors leave OPERATION: HGP, they will have gained a tremendous amount of knowledge and insight about the HGP. Finally, having thoroughly explored the exhibition, it is my hope, as the designer, that people will have a deeper awareness of all the benefits and repercussions related to HGP. I also hope that visitors will leave with a newly awakened desire to expand upon their knowledge gained from their OPERATION: HGP experience, and learn more about the fascinating HGP.

 

A special thanks to the staff at the Milwaukee Public Museum, particularly Mrs. Patricia Burke, for showing me all the strategic planning, hard work, and dedication that goes into creating a new museum exhibition.

 


References

Andrews, Lori B. The Clone Age: Adventures in the New World of Reproductive Technology. New York: Henry Holt and Company, 1999.

Bodmer, Walter, and McKie, Robin. The Book of Man: The Human Genome Project and the Quest to Discover Our Genetic Heritage. New York: Scribner, 1995.

Fox, Dr. Michael W. Beyond Evolution: The Genetically Altered Future of Plants, Animals, the Earth . . . and Humans. New York: The Lyons Press, 1999.

Gorner, Peter, and Jeff Lyon. Altered Fates: Gene Therapy and the Tooling of Human Life. New York: W. W. Norton & Company, Inc., 1995.

Kitcher, Phillip. The Lives to Come: The Genetic Revolution and Human Possibilities. New York: Simon & Schuster, 1996.

Lee, Thomas F. The Human Genome Project: Cracking the Genetic Code of Life. New York: Plenum Press, 1991.

Shapiro, Robert. The Human Blueprint: The Race to Unlock the Secrets of Our Genetic Script. New York: St. Martin's Press, 1991.

U.S. Department of Energy, Office of Health and Environmental Research. (1999). To Know Ourselves: An Overview of the Human Genome Project.[Online]. http://www.ornl.gov/hgmis/publicat/tko/08_ethical.html

U.S. Department of Energy, Office of Health and Environmental Research. (1999). Human Genome Project Information. [Online]. http://www.ornl.gov/hgmis/resource/elsi.html

Wade, Nicholas. The Science Times Book of GENETICS: The Best Science Reporting from the Acclaimed Weekly Section of The New York Times. New York: The Lyons Press, 1998.

Wingerson, Lois. Mapping Our Genes: The Genome Project and the Future of Medicine. New York: Dutton, 1990. 

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