Genome announcement a milestone, but only  a beginning

  Leaders say discovery must be linked to responsible use 

 June 26, 2000  Web posted at: 6:51 p.m. EDT (2251 GMT)   From staff reports

  (CNN) -- The sequencing of the human genome is a scientific milestone, U.S.  and British researchers said Monday, but the most important work lies ahead, in  determining how to put the information to medical use. 

  The heads of the public and private efforts to decipher the genetic makeup of  human beings announced the completion of a rough draft of the project -- more  than 10 years after it was begun. 

  "Mapping the human genome has been compared  with putting a man on the moon, but I believe it is  more than that," said Dr. Michael Dexter, the  director of the Wellcome Trust, which funded the  British part of the Human Genome Project. 

  "This is the outstanding achievement not only of  our lifetime but perhaps in the history of  mankind," Dexter told a London news  conference. 

  'Technological triumph'

  The progress the researchers have made heralds a  new era of medical discovery, U.S. President Bill  Clinton and British Prime Minister Tony Blair  declared at a White House news conference  acknowledging the successes. 

  "This is the most important, most wondrous map  ever produced by humankind," Clinton said in  Washington. "Humankind is on the verge of  gaining immense new power to heal. Genome  science ... will revolutionize the diagnosis,  prevention and treatment of most, if not all,  human diseases." 

  Joining Clinton via satellite link from London,  Blair called the genome project "the first great  technological triumph of the 21st century." 

  Both leaders, however, emphasized the need to  use the information wisely and maintain  international cooperation in its development. 

  The medical benefits of genome science, they  agreed, must be used to benefit all people, not  only a privileged few. Individual privacy must be  protected as science moves forward with the  project, and the information must not be used to  discriminate against any group or person. 

  If the project proves anything, Clinton said, it is  that "the most important fact of life on this Earth  is our common humanity." 

  The sentiment was echoed by the men who have  directed the U.S. research teams pursuing the  genome puzzle. 

  "What a profound responsibility it is to do this  work," said Dr. Francis Collins, director of the  Human Genome Project at the National Institutes  of Health. "Historians will consider this a turning  point." 

  J. Craig Venter, who heads the private company  Celera Genomics, concurred. 

  "It is my belief that the basic knowledge that  we're providing to the world will have a profound  impact on the human condition and the treatments  for disease and our view of our place on the  biological continuum," Venter said. 

  All the researchers involved praised the high level  of international cooperation that enabled them to  reach this stage, and they pledged to keep that  momentum going. 

  Potential for medical breakthroughs

  Mapping the chemical sequences for human DNA  -- the chemical "letters" that make up the recipe  of human life -- is a breakthrough that is expected  to revolutionize the practice of medicine by  paving the way for new drugs and medical  therapies. 

  Specific sequences of DNA characters form the  genes that make us what we are, govern our  biological functions and determine our  susceptibility to illnesses like cancer or diabetes. 

  Mapping involves three separate steps:  sequencing, assembling and annotating the genes. 

  In the sequencing phase, researchers identified  the approximately 3.5 billion chemical letters (A,  C, G, T) that make up human DNA, the building  block of the genes. 

  In the assembling phase, they put those letters in  the correct order, allowing them to "read" each  gene. 

  Venter said Celera had sequenced 99 percent of  the human genome and had assembled 3.21 billion  letters of genetic code. The most difficult part is  yet to come, however.   

                 In the final step, annotating, scientists must  identify each gene and its function. They will look  for the genetic variations in people -- variations  that could be the cause of countless diseases. 

  That step is expected to take several years to complete. However, scientists said  doctors one day would be able to study a person's genetic profile, determine his  susceptibility to various diseases, and design a course of treatment to prevent  illness. 

  "You're going to see a proliferation of discoveries about the genetic contributions  to diabetes and heart disease and high blood pressure and schizophrenia and  multiple sclerosis and on down the list," Collins told CNN. 

  "Conditions that we know have genetic contributions but which have been rather  difficult to nail down, this set of power tools that the genome project is  producing will accelerate this discovery process rather dramatically, and we're  going to see the consequences of that in the next three to five years," Collins  said. 

  Fears of abuse

  Despite the potential for medical advancements, many Americans are divided  over the implications of the genome project. 

  In a CNN-Time magazine poll taken two weeks ago, 46 percent of respondents  said they expected harmful results from the endeavor. Forty percent expected  benefits. About 41 percent of respondents said the project is morally wrong; 47  percent disagreed. 

  Nevertheless, a majority of respondents  -- 61 percent -- said they would want  to know if they were predisposed to  developing a genetic disease. About 35  percent would not want to know. 

  The question of who should have  access to genetic information is one of  the most controversial stemming from  the project. 

  In the poll, 67 percent of respondents  said doctors should be able to get  genetic information. About 20 percent said it should be available to insurance  companies, and only 14 percent said it should be available to the government.   

                 Arthur Caplan, director of the Center for Bioethics at the University of  Pennsylvania, said providing genetic information to insurers or employers could  have negative consequences if a person is predisposed to a particular disease. 

  "They might say, 'We don't want to hire you if you're going to have high medical  costs. We don't want to give you life insurance,'" Caplan said. 

              Protecting the privacy of genetic information is extremely important,   Caplan added, as is the issue of consent. "We need to have a law, a   federal law -- probably an international  law -- that says no testing without the express permission of the person,"              Caplan said. 

              Different methods, common   goal  

            The Human Genome Project is an  international consortium supported mostly by the U.S. National Institutes of  Health and the Wellcome Trust, a philanthropic organization based in London.  Celera Genomics is a private company in Rockville, Maryland. 

  The high level of international cooperation was instrumental in accomplishing so  much of the project so quickly, the NIH's Collins said Monday. 

  Although the public and private groups are using different methods in their  human genome projects, they both have as a goal the discovery of the chemicals  of the approximately 80,000 genes that make up the human body.