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.
BACKLASH: The National Party quit its decades-long partnership with the Liberal Party after their election loss to center-left Labor, which won a historic third term Australia’s National Party has split from its conservative coalition partner of more than 60 years, the Liberal Party, citing policy differences over renewable energy and after a resounding loss at a national election this month. “Its time to have a break,” Nationals leader David Littleproud told reporters yesterday. The split shows the pressure on Australia’s conservative parties after Prime Minister Anthony Albanese’s center-left Labor party won a historic second term in the May 3 election, powered by a voter backlash against US President Donald Trump’s policies. Under the long-standing partnership in state and federal politics, the Liberal and National coalition had shared power
NO EXCUSES: Marcos said his administration was acting on voters’ demands, but an academic said the move was emotionally motivated after a poor midterm showing Philippine President Ferdinand Marcos Jr yesterday sought the resignation of all his Cabinet secretaries, in a move seen as an attempt to reset the political agenda and assert his authority over the second half of his single six-year term. The order came after the president’s allies failed to win a majority of Senate seats contested in the 12 polls on Monday last week, leaving Marcos facing a divided political and legislative landscape that could thwart his attempts to have an ally succeed him in 2028. “He’s talking to the people, trying to salvage whatever political capital he has left. I think it’s
CONTROVERSY: During the performance of Israel’s entrant Yuval Raphael’s song ‘New Day Will Rise,’ loud whistles were heard and two people tried to get on stage Austria’s JJ yesterday won the Eurovision Song Contest, with his operatic song Wasted Love triumphing at the world’s biggest live music television event. After votes from national juries around Europe and viewers from across the continent and beyond, JJ gave Austria its first victory since bearded drag performer Conchita Wurst’s 2014 triumph. After the nail-biting drama as the votes were revealed running into yesterday morning, Austria finished with 436 points, ahead of Israel — whose participation drew protests — on 357 and Estonia on 356. “Thank you to you, Europe, for making my dreams come true,” 24-year-old countertenor JJ, whose
UNSCHEDULED VISIT: ‘It’s a very bulky new neighbor, but it will soon go away,’ said Johan Helberg of the 135m container ship that run aground near his house A man in Norway awoke early on Thursday to discover a huge container ship had run aground a stone’s throw from his fjord-side house — and he had slept through the commotion. For an as-yet unknown reason, the 135m NCL Salten sailed up onto shore just meters from Johan Helberg’s house in a fjord near Trondheim in central Norway. Helberg only discovered the unexpected visitor when a panicked neighbor who had rung his doorbell repeatedly to no avail gave up and called him on the phone. “The doorbell rang at a time of day when I don’t like to open,” Helberg told television
RSS