Who Owns Your DNA? Who Will Own It?
Quietly and doggedly, a race is going on in laboratories around the world—the race to determine who will own human heritage.
On one side is the G5, as Frances Collins, MD, PhD, director of the National Human Genome Research Institute, calls the US and British sequencing teams chasing the full sequence of the human genome at breakneck speed. On the other side is the private sector, most notably Craig Venter, PhD, chief scientific officer of Celera, a genomics company.
Each group has the same mission: to unravel the sequence of human DNA. DNA is written in the 4-letter alphabet of C(ytosine), (G)uanosine, (A)denine, and (T)hymine and is the blueprint for human life. When the code is written correctly, a healthy, whole human results. Any misspellings, however, can result in a defect and a disease. As many of us know all too well, those single-gene defects can be deadly.
As Dr Collins put it in a recent speech before the Houston Forum Club, “Virtually all disease, except some trauma, has a hereditary component. And there are no perfect genetic specimens.”
What does this mean? It means that the predisposition to disease can be found in the misspellings of a person’s DNA. In most cases, whether a person gets the disease or not depends on environment: the chemicals that surround homes and offices, the viruses with which individuals come in contact, the stresses under which people live day in and day out, etc. In only a few cases is the disease “hard-wired” into the DNA. For example, if you get the 2 mutated genes for cystic fibrosis, you will have that disease.
Every day, scientists identify new genes associated with diseases. It is getting easier because of the Human Genome Project. When the sequence of the genome is finished, a scientist will have a relatively easy time identifying the gene associated with a disease and determining where on that long, 3-billion base-pair strand the gene is located.
From that knowledge will come new diagnostic tests that will be able to tell people the diseases to which they are prone; eventually, this information will result in new treatments. It will give doctors new tools with which to care for their patients. A new field called pharmacogenetics may enable physicians to know which drugs will and will not work for a particular patient.
These tools will enable physicians to tailor therapy to an individual’s biology. With genetic tools, a physician can tell a person his or her specific risk of disease. If a physician can tell a person that his or her risk is 4 times that of normal and that changing behavior will reduce that risk to less than normal, “it’s a teachable moment,” said Dr Collins.
Before such tools can be developed, however, researchers must have access to the genome project’s final product: the complete blueprint of human existence. Therein lies the rub.
The project Dr Collins heads is dedicated to the notion that the human genome should be a public property so that any scientist interested in working on a particular problem will have access to it. To that end, the National Institutes of Health has funded 3 centers to finish writing the long book of human heredity. One is at Baylor College of Medicine under the leadership of Richard Gibbs, PhD. Another is in St Louis, Mo, at Washington University. A third is at the Whitehead Institute at the Massachusetts Institute of Technology.
The Sanger Institute in the United Kingdom is part of this consortium, as is the Joint Genome Institute of the US Department of Energy. Partners from around the world aid in the sequencing efforts of these 3 coordinating centers. Dr Collins calls them the G5. In essence, he said, “We make power tools and we give them away.”
Their opponent in this race is the private sector—most notably, the company Celera Genomics under the leadership of Craig Venter, PhD. The 2 opposing groups use different techniques for decoding the genome, but to the public there is one major difference. The G5 make their information immediately known by publishing it on the Internet, but no one outside of the company and a few pharmaceutical firms have seen Celera’s data. The race is on to determine who will own the information—who will own the genetic code of all human life.
The consortium funded by the federal government is determined that the information be made public so that all scientists can have an opportunity to use it. Venter must answer to stockholders who may or may not want to patent crucial portions of the code. That would mean that parts of the genome could be denied to scientists who cannot not pay the patent fee.
To avert that, the G5 have sped up their sequencing efforts and are putting the genetic code on the Internet as soon as they have deciphered it. It is a monumental task. About 80 000 genes are encoded in DNA, which leaves a lot of genetic material that may or may not have a role in determining how human life is lived. The rough draft of that sequence, however, is expected to be complete by the spring of 2000, which is just a few months away. The final draft will be finished in the year 2003. Both dates are far in advance of what was considered possible when the project began in 1990.
“In 1990, we had no idea how to do this,” said Dr Collins. In fact, when he took over the leadership of the institute in 1996, he was preparing his speech to the Congress on how “this was harder than we thought.”
However, a few years of trial and error resulted in impressive new tools that have sped up the process immeasurably. The code is already >40% complete, and one complete chromosome has been sequenced. In November, the group celebrated the fact that they had sequenced more than 1 billion base-pairs.
A place does exist for the private sector in genome work. Without the help of pharmaceutical companies, gene-based treatments and cures will never come to fruition. The information from which all that starts, however, should be public, say Collins, Gibbs, and others in the field.
“I’m excited about the private sector participation,” said Dr Collins on a recent visit to Houston. He can even foresee the need for patents—when they are attached to a product. Eventually, he hopes that the private companies will allow their sequencing information to become public as well. Dr Collins won’t be satisfied until the entire sequence is on the Internet.
- Copyright © 2000 by American Heart Association