of the questions that comes to mind when researchers report sequencing
the human genome is this: Whose Genome Is It Anyway? The answer turns
out to be that it doesn't really matter. As scientists long suspected,
human beings are all very much alike when it comes to our genes. As reported
in the February 16th issue of Science (released today), Celera data
suggest that the DNA of human beings is 99.9 percent alikea powerful
statement about the relatedness of all humankind. This relatedness is
reflected beautifully in Science's striking cover.
To sequence the genome, scientists at Celera Genomics used DNA from five
individuals of varying ethnicity, and also included data compiled by the
publicly funded Human Genome Project. The five people whose genomes were
used in sequencing came from a pool of 21 donors, who were accepted according
to rigorous criteria for informed consent. Celera created an Institutional
Review Board (IRB) that developed a set of procedures that strictly adhere
to the requirements the United States government has established for any
research on human beings or their blood and other tissues. One of the
very first things the members of the IRB agreed is that the identity of
the men and women who donated DNA samples for sequencing must not be revealed.
Donors were promised that their names would never be made public. A careful
system for coding samples means that even within Celera itself, the donors'
privacy is secure.
Therefore, one of the most asked questions about sequencing: "Whose genome
is it anyway?" cannot be answered. What can be said is that five donors
were selected from a pool of up to 30 individuals who volunteered because
they knew about the program, responded to newspaper ads, or reacted favorably
to outreach efforts to ensure ethnic diversity. Harold P. Freeman, M.D.,
a member of Celera's IRB, wrote the following prologue to the protocol
to speak to the very important matter of diversity.
Mapping the DNA sequence variation in the human genome holds the potential
for promoting the fundamental unity of all humankind. Throughout recorded
history and up to the present time, countless human conflicts have occurred
based on how groups of people have seen, classified and behaved toward
Popular conceptualizations of race date back several centuries and
are rooted in 19th and early 20th century scientific thought. In the
past, some scientists used observations of racial differences to support
racist doctrines. Racism, rooted in the erroneous concept of biological
racial superiority, has powerful societal effects and continues to influence
Race as used in the United States is a social and political construct
derived from our nation's history. It has no basis in science. The biologic
concept of race is now believed to be untenable.
The power of science can be used to eliminate public perceptions of
racial superiority and inferiority, which are the basis of racism itself.
In this way, the mapping of the human genome could be pivotal in promoting
the concept of one race, the human race.
Members of the Institutional Review Board
Paul Calabresi, M.D., Chair
Dr. Calabresi, an internationally recognized authority on the pharmacology
of anti-cancer agents, was appointed Director of Brown-Tufts Cancer Center
in November, 1997, and is currently Professor of Medicine and Chairman
Emeritus of the Department of Medicine at Brown University School of Medicine
and Director of the Division of Clinical Pharmacology at Rhode Island
Hospital. He is a Clinical Professor of Medicine at Tufts University.
He serves on the President's Cancer Panel and is a former chairman of
the National Cancer Advisory Board. Dr. Calabresi is a member of the National
Institute of Medicine of the National Academy of Sciences.
Arthur L. Caplan, Ph.D.
Dr. Caplan, a leading authority on ethical issues surrounding research
in the biomedical sciences, is Director of the Center for Bioethics, University
of Pennsylvania Health System, and Chairman of the Advisory Committee
to the U.S. Department of Health and Human Services, Centers for Disease
Control and Prevention, and the Food and Drug Administration on Blood
Safety and Availability.
Michele K. Evans, M.D.
Dr. Evans, a physician-scientist who is an active spokesperson for women
and minority scientists, is currently Deputy Scientific Director for the
Intramural Research Progam of the National Institutes on Aging, National
Institutes of Health.
Harold P. Freeman, M.D.
Dr. Freeman, a leading authority on the inter-relationships between race,
poverty and cancer, is President, CEO and Director of Surgery at North
General Hospital in New York City. He is currently Chairman of the President's
Cancer Panel and has served as President of the American Cancer Society.
Dr. Freeman is the former Director of Surgery at Columbia University and
is Chairman of the New York State Breast Cancer Treatment Quality Advisory
Panel. He is a member of the Institute of Medicine of the National Academy
Judith E. Karp, M.D.
A board-certified oncologist, Dr. Karp is an authority on the molecular
mechanisms of leukemias and lymphomas. She is currently Professor of Hematology,
University of Maryland Cancer Center in Baltimore, MD.
Mr. Margus is an articulate patient advocate for people concerned about
Ataxia Telangiectasia, a rare genetic syndrome. He is President of the
AT Children's Project at Deerfield Beach, FL. He is a national speaker
and fund raiser for the AT Children's Project.
Charles P. McCarthy, Ph.D.
Dr. McCarthy, a well-known authority on the ethics of human research,
is a Senior Research Fellow, Kennedy Institute of Ethics, at Georgetown
University, Washington, D.C. He is the former Director of the Office for
the Protection from Research Risks, National Institutes of Health, and
is a member of the Board of Directors of Public Responsibility in Medicine
and Research. He is a charter member of the Board of the Association for
the Accreditation of Human Research Protection Programs.
Gerald D. Rogell, M.D., P.A.
A board-certified ophthalmologist, Dr. Rogell is the Senior Attending
Physician at the Washington Hospital Center and Assistant Clinical Professor
at Georgetown University Hospital. He is a leading authority on diseases
of the retina and an expert on laser treatment of diabetic retinopathy.