The Challenges and Impact of Human Genome Research for Minority Communities

proceedings from a conference presented by
Zeta Phi Beta Sorority, Inc., National Educational Foundation
July 7-8, 2000, Philadelphia, PA


Zeta Background
Acknowledgments
Introduction
Foreword
Zeta NEF Purpose

Conference
Conference Mission
Conference Objectives
Research Plans
Conference Agenda
Conference Summary
Workshop I Summary

Workshop II Summary
Workshop III Summary
What's Next?
Photographs
Human Genome News article

Presenters
Dr. Aristides A. Patrinos
Dr. John Quackenbush
Dr. Georgia M. Dunston
Dr. Mary Kay Pelias
Dr. Fatimah Jackson
Dr. Christopher Adams
Dr. Rosalind P. Hale
Dr. Margaret C. Werner-Washburne
Rev. Dr. Deborah P. Wolfe
Dr. Jeroo S. Kotval
Betty K. Mansfield
Issie L. Shelton Jenkins, Esq.
Phyllis Griffin Epps, Esq.
Dr. Kathryn T. Malvern

Contact Information
Board of Managers
Presenters
National Educational Foundation

Rev. Deborah P. Wolfe, Ph.D., Past Grand Basileus, Zeta Phi Beta
Professor Emerita, Queens College, City University of New York

We couldn’t have picked a more timely subject! This week’s Newsweek headline reads, "A Genome Milestone." Time writes, "The Race is Over."

The great genome quest is officially a tie and U.S. News and World Report claims, "We’ve only just begun: Gene map in hand, the hunt for proteins is on."

And so it is!

It took more than a decade of constant effort, it cost $3 billion in federal funds, and it fueled fierce battles between government and corporate scientists, but at last it is done. This week researchers will announce that they have successfully mapped the human genome, the famous DNA strand of more than 3 billion chemical "letters" that spell out instructions for how to build a human being.

Yet, despite the grand aura of the double helix, knowing its code is really only a means to a greater end. To learn what makes the human body thrive or falter, scientists will now brave an endeavor that dwarfs the genome project. Welcome to the world of "proteomics," which is the study of proteins, the most complex of all known molecules. Proteins are in essence everything that DNA blueprints call for: workers that build the body and keep it in good repair, and warriors that battle invaders. By watching what goes right or wrong as proteins attempt to carry out genetic instructions, scientists hope to finally attain some of the highest aims of medicine, such as the prevention of breast cancer and the cure for heart disease.

It is difficult to know which is more impossible, the work of proteomics or its purported benefits. Each of the body's genes carries the code to create as many as ten different proteins, and each of those proteins links with hundreds of other proteins, sometimes creating still more proteins in the process. All in all, the body may have 2 million or more distinct proteins. A single protein is so complex that IBM plans to spend the next five years deciphering how just one particular protein forms its unique shape. To do that, the company will need to create a computer five hundred times as powerful as any in existence today and four times as fast as today’s forty fastest machines working in concert.

Though the challenge is daunting, nearly every major biomedical entity is rushing in. P.E. Corp-Celera genomics Chief, J. Craig Venter, guru of the private genome-mapping efforts, raised nearly $1 billion to create a new proteomics center and promised to "dominate the field." New announcements arrive daily from pharmaceutical firms launching proteomics teams in search of hitting pay dirt with novel protein-altering drugs.

You know better than I the struggle between the Department of Energy and the National Institutes of Health as the government's representatives in the Human Genome Project and private industry’s representative for the current announcement to be made.

All humankind is grateful that these groups agreed to come and "reason together" for the good of all. It is impossible to overstate the significance of this achievement. Armed with the genetic code, scientists can now start teasing out the secrets of human health and disease at the molecular level—secrets that will lead at the very least to a revolution in diagnosing and treating everything from Alzheimer’s to heart disease, cancer, and more. In a matter of decades, the world of medicine will be utterly transformed, and history books will mark this period (the week of June 20 – July 4, 2000) as the ceremonial start of the genomics era.

So we have just begun!

And now I come to my role in this discussion. Since, as you know, I did not participate in bringing about this great discovery, and since I really know so little about the details of the study, all I can do as a teacher, as a preacher, as an interested citizen is raise questions to you who are specialists.

First:
To be certain that I really understand and my good sorority sisters and friends understand: what is the Human Genome Project? Who directed the Human Genome Project?

Second: Which U.S. laboratories and investigators were involved? Were other countries involved?

Third: What are the major benefits resulting from the study?

Fourth: In what ways may the findings present ethical problems and questions?

Fifth: Are there legal questions that should be raised? Why was such a small percentage of the project budget (3% to 5%) set aside to examine such important issues?

Sixth: In what ways will these findings affect social behavior?

Seventh: How will these findings affect the teaching of science in elementary schools,
middle schools, high schools, and in higher education?

Eighth: What person or group is currently devising curricula to include these new findings? How soon will such curricula be available?

Ninth: What should we teach children and youth about DNA?

Tenth: Where can we access maps of genes? Why is it important?

Eleventh: What is DNA sequencing? Why is it important? How is it done?

Twelfth: Why is model organism research important?

Thirteenth: Why should we fear undue cloning?

Fourteenth: What efforts are being made to include sociologists, psychologists, theologians, and others in further research?

Truly, we have just begun! What a timely discussion!

What a wonderful challenge! Let’s get on board!

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The online presentation of this publication is a special feature of the Human Genome Project Information Web site.