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The head of the human genome team gave up privacy: this is my genome

Disappointment among the "Celera" scientists: the decoded genome is largely based on the DNA of the team leader

By Nicholas Wade, New York Times

When the scientists at Celera Genomics announced two years ago that they had decoded the human genome, they claimed that the source of the genetic data was from anonymous donors, and that the data constituted a universal human map. But the scientist who headed the team, Dr. Craig Venter, says today that the genome that was decoded was largely his own.

Reactions among the scientific community ranged from amusement to indifference. The majority said that the question of the origin of the deciphered genes was not important. But members of Celera's scientific advisory team expressed disappointment that Venter did not follow the anonymous selection process, which they approved.

Venter, a pioneer in the use of new equipment for deciphering DNA sequences, challenged the academic team that deciphered the human genome with the support of the government. Although he started the decipherment work years after him, he managed to catch up with the academic staff in June 2000.
Both teams claimed that the DNA sequence they deciphered was based on the DNA of anonymous donors. Baslera claimed that the DNA was taken from five donors sampled from 20 people from five different ethnic groups. However, in an interview this week, Venter explained a comment he made on the "60 Minutes" II program on April 17, according to which Celera's genome project is largely based on his DNA.

The publication of the fact that the donated DNA is Venter's, takes away his genetic privacy completely, even though for the time being, only those who subscribe to Celera's genetic database will be able to view his genetic data.

Although five people have contributed to Celera's genome, Venter is the primary contributor. He says he inherited a gene known as apoE4 from one of his parents, which is linked to abnormal metabolism and Alzheimer's disease, and now takes lipid-lowering drugs to combat the gene's effects.

In an interview this week, Venter said that the reason why he wanted to decipher his genome was partly scientific curiosity, as well as a sense of obligation: since he asked other people to donate tissue and risk intruding on their genetic privacy, he felt he had to be the first in line.

According to him, he did not publish it at the time, "because I did not want it to be the focus of attention. Now I don't think it matters." He is not bothered by the possibility of being accused of selfishness: "I was accused of this so many times, I got over it."

The academic team did not express much excitement at the news that their opponent had sequenced his own genome. "It doesn't surprise me; It fits Craig," said Dr. James Watson, one of the discoverers of the DNA structure. According to Dr. John Sulston, former director of the Sanger Center in England, "this is of no real importance". Dr. Francis Collins, Director of Genome Research at the US National Institutes of Health, declined to comment.

But members of Celera's advisory team of scientists expressed regret that the process they approved for selecting anonymous donors was not followed. "I think the original idea, to maintain complete anonymity, was not a bad idea," said Dr. Richard Roberts, the scientific director of Biolabs in New England and a member of the team. Another friend, Dr. Arthur Kaplan, who studies biomedical ethics at the University of Pennsylvania, said: "A genome should be a landmark, and it should remain anonymous, be a map of all of us, not of one person, and I am disappointed that the genome will be linked to a specific person."
According to him, the motivations for deciphering the human genome were the desire to achieve a scientific breakthrough and personal glory, and Venter's actions are an example of the latter.

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