A group of scientists and researchers fascinated with the human genome said on Monday they would post online their most private personal information — their medical records and DNA sequence of some of their own genes — all for the sake of research.
Led by Harvard Medical School genetics professor George Church, nine people plan to post their records and the DNA sequence of about one-fifth of their genes on the Web.
The participants also include Harvard psychology professor Steven Pinker and John Halamka, chief information officer at Harvard Medical School. A 10th participant, Misha Angrist, science editor at the Duke University Institute for Genome Sciences & Policy, said he plans to make his medical records public, but is still deciding on whether to make his sequencing information public.
Harvard said this is the first phase of a major initiative to make personal genome sequencing more affordable and accessible.
The release is part of the Personal Genome Project, which is designed to serve as a resource for researchers investigating the genetic basis of diseases and other traits.
OPTIONS
Members of the group received the protein-coding regions of their genomes on Monday.
After reviewing the information with a doctor, they were given the option of sharing it with the research community and general public by posting it on the project’s Web site.
Participants discussed their decisions at a news conference at Harvard on Monday afternoon.
Halamka said his results showed he could be at an increased risk for several diseases, including prostate cancer and a neurological disorder that causes weakness and numbness in the legs. He said knowing he has an increased risk could help him when he has a physical examination.
“I think as a family we will now approach our care a little differently,” he said.
Participants said they decided to make their information public to help medical research.
“I believe that there’s a great advantage to each of us knowing our sequences, but it is also to me inconceivable that absolute genetic privacy will be maintained,” said Stanley Lapidus, chairman and CEO of Helicos BioSciences Corp.
APPROVAL
Earlier this year, Church’s project won approval from Harvard’s ethical review board to sequence and post the genes and records of 100,000 willing participants. Church later asked nine people to participate in the first stage of the project.
The Personal Genome Project’s Web site was yesterday set to post the DNA sequences, cell lines and medical and non-medical traits of participants who agreed to disclose their information. Anyone with access to the Internet can view the information.
Concerns about genetic privacy prompted Congress to pass the Genetic Information Nondiscrimination Act, which prohibits insurers or employers from discriminating against people based on their genetic information. The act was signed into law in May.
So far, the project has sequenced about 20 percent of the genome regions of participants, but it will eventually scan all their genes.
Last year, DNA pioneers J. Craig Venter, president of a genetics research institute, and James Watson, co-discoverer of DNA’s molecular structure, made their genomes public on scientific Web sites.
Nearly half of China’s major cities are suffering “moderate to severe” levels of subsidence, putting millions of people at risk of flooding, especially as sea levels rise, according to a study of nationwide satellite data released yesterday. The authors of the paper, published by the journal Science, found that 45 percent of China’s urban land was sinking faster than 3mm per year, with 16 percent at more than 10mm per year, driven not only by declining water tables, but also the sheer weight of the built environment. With China’s urban population already in excess of 900 million people, “even a small portion
UNSETTLING IMAGES: The scene took place in front of TV crews covering the Trump trial, with a CNN anchor calling it an ‘emotional and unbelievably disturbing moment’ A man who doused himself in an accelerant and set himself on fire outside the courthouse where former US president Donald Trump is on trial has died, police said yesterday. The New York City Police Department (NYPD) said the man was declared dead by staff at an area hospital. The man was in Collect Pond Park at about 1:30pm on Friday when he took out pamphlets espousing conspiracy theories, tossed them around, then doused himself in an accelerant and set himself on fire, officials and witnesses said. A large number of police officers were nearby when it happened. Some officers and bystanders rushed
Beijing is continuing to commit genocide and crimes against humanity against Uyghurs and other Muslim minorities in its western Xinjiang province, U.S. Secretary of State Antony Blinken said in a report published on Monday, ahead of his planned visit to China this week. The State Department’s annual human rights report, which documents abuses recorded all over the world during the previous calendar year, repeated language from previous years on the treatment of Muslims in Xinjiang, but the publication raises the issue ahead of delicate talks, including on the war in Ukraine and global trade, between the top U.S. diplomat and Chinese
HYPOCRISY? The Chinese Ministry of Foreign Affairs yesterday asked whether Biden was talking about China or the US when he used the word ‘xenophobic’ US President Joe Biden on Wednesday called for a hike in steel tariffs on China, accusing Beijing of cheating as he spoke at a campaign event in Pennsylvania. Biden accused China of xenophobia, too, in a speech to union members in Pittsburgh. “They’re not competing, they’re cheating. They’re cheating and we’ve seen the damage here in America,” Biden said. Chinese steel companies “don’t need to worry about making a profit because the Chinese government is subsidizing them so heavily,” he said. Biden said he had called for the US Trade Representative to triple the tariff rates for Chinese steel and aluminum if Beijing was