America is in the middle of a three-year commemoration of the Lewis and Clark Expedition in search of a watery Northwest Passage to the...
America is in the middle of a three-year commemoration of the Lewis and Clark Expedition in search of a watery Northwest Passage to the Pacific. November 2005 marks the 200th anniversary of their arrival on the Pacific Coast. A year later, in 1806, Lewis and Clark presented President Thomas Jefferson with the first map of the American Northwest, an image that defined a nation.
Another group of explorers, almost 195 years later, presented a president with a different kind of map — the map of the human genome. Another Jefferson, William Jefferson Clinton, drew a comparison to Lewis and Clark, saying of the human genome sequence: “Without a doubt this is the most important, most wondrous map ever produced by humankind,” an image that defines humanity.
Both presidents knew a truth: Maps show the way. The information contained empowers. But a map alone is not enough. As in the case of western expansion, pioneers had to follow the path marked by Lewis and Clark. They had to move their families to the Pacific Northwest, till the land, and build the great industries and cities if Jefferson’s vision of America were to be fulfilled.
The same is now true of the map of the human genome. The Human Genome Project, the international collaboration that produced the genomic map, was completed in April 2003, the 50th anniversary of the James Watson-Francis Crick discovery of the structure of DNA, the molecule that carries the code of heredity.
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Researchers around the world now mine the genome’s freely available information to understand how our bodies work and to produce new treatments when something goes wrong. Only when this medical promise is fulfilled, and appropriate policy decisions have been made that will maximize benefits, will the vision of the Human Genome Project be realized.
The Pacific Northwest is a leader in this pioneering work. The University of Washington is home to some of the most creative people in the field of genomics. That is why my organization, the National Human Genome Research Institute (NHGRI), has invested more than $30 million over five years in two Centers of Excellence in Genomic Science at UW. There are only nine such centers in the whole country, and no other institution has more than one. The two UW centers focus on understanding how cells use genomic information, how people differ at the genetic level, and why those differences lead to inherent risks of illnesses.
The federal government primarily invests in fundamental scientific questions and the new techniques necessary for this exploration. As insights and knowledge emerge from such studies, industry must convert that knowledge into medical advances that will help patients. Again, the Pacific Northwest and its vibrant biotech industry can be expected to lead.
It is safe to predict that these scientific advances and technological changes will profoundly change the future of medicine — as well as society. That is why NHGRI invests about 5 percent of its budget into the study of the ethical, legal and social implications of genomic science, what we call the “ELSI” program.
Here again, UW is a leader, receiving one of NHGRI’s first Center of Excellence in ELSI Research grants — nearly $5 million for the university’s Center for Gen-omic Health Care and the Medically Underserved, to understand the social factors that influence the translation of genetic information to improved human health.
Understanding the social impacts of advances in genomics is not a task for researchers alone. Communities need to find their own voices and scrutinize their own values to determine how genomic information should be used. Recently, the University of Washington partnered with NHGRI to host a community engagement at which more than 400 of your neighbors came to campus to learn about genomic science and to discuss its implications.
We all need to learn a lesson from an aspect of the Lewis and Clark expedition that did not go so well — the lesson of listening to the voices of the community. Lewis and Clark brought back knowledge that opened up the Pacific Northwest to European settlers. But the land was not vacant. American Indians already lived throughout the region. When the white settlers came, bitter conflicts arose and, in the end, many indigenous peoples were pushed aside.
We must ensure that we do not push anyone aside as genomic exploration proceeds. We need to make sure that unjust actions, such as those inflicted upon the American Indians 200 years ago, are not repeated as we strive to build a new life in this rapidly expanding gen-omic frontier.
The risks now are of a different sort, but they are compelling. Consider the current case of NBA center Eddy Curry, 22, the youngest player ever drafted by the Chicago Bulls. This spring, doctors discovered that Curry had an enlarged heart and an irregular heartbeat. There is concern that he may have a condition, called hypertrophic cardiomyopathy, that can have a genetic cause.
A gene test can detect 60 percent of people who inherit a mutation that puts them at risk, and the Bulls wanted Curry to take the test — but at what consequence? If he has the genetic mutation, is his career over? Does he lose his job because of a genetic test? How about his health insurance? And if the test is negative, does that really mean he is not at risk, since 40 percent of those with the genetic predisposition cannot be detected by the current test? Might he still suddenly die if he continues to play?
Granted, star athletes may be different as they are handsomely paid to take the risk of injury from their sport. But what about someone working on the railroad? A couple of years ago, the Burlington Northern Santa Fe Railway tested the genes of injured workers, without their permission, to try to detect a genetic predisposition to carpal tunnel syndrome. The railway, apparently, was looking for a way to avoid workman’s compensation claims by using an unproven genetic test. Only media coverage and action by the U.S. Equal Employment Opportunity Commission stifled those threats.
If it can happen on the railroad, genetic discrimination can happen anywhere. Many surveys have, in fact, documented public concern about this. For Americans to benefit from the Human Genome Project without fear, we need more secure protections. We need a federal anti-discrimination law.
In 2003 and again in this 2005 session, the U.S. Senate passed a bill to prohibit discrimination on the basis of genetic information with respect to health insurance and employment. That bill — introduced by Sen. Olympia Snowe, R-Maine, but with co-sponsors including Sens. Maria Cantwell and Patty Murray, Democrats of Washington — now awaits action in the U.S. House of Representatives. The legislation is supported by the Bush administration and if enacted into law would ensure that no one in America would lose their jobs or their health insurance because of a genetic test result.
At stake is nothing less than your health and perhaps the health of the Seattle economy. The biotech companies that hope to prosper in this new era of genomic science will not get far if the public refuses to accept their products because of discrimination fears. We need to avoid the unintended consequences of the new knowledge. We need to ensure that these coming revelations about the genome provide benefits to all Americans.
Dr. Francis S. Collins is the director of the National Human Genome Research Institute, one of the 27 institutes and centers making up the National Institutes of Health, in Bethesda, Md. He was a guest speaker on May 21 at “A Community Forum on Genetics: DNA, Health and Social Justice” in William H. Gates Hall at the University of Washington Law School.