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Elizabeth Cooney is a health reporter for the Worcester Telegram & Gazette.
Boston Globe Health and Science staff:
Karen Weintraub, Deputy Health and Science Editor, and Gideon Gil, Health and Science Editor.
Short White Coat blogger Ishani Ganguli
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Wednesday, July 25, 2007
Telling all, genetically speaking
Technology consultant Esther Dyson writes about being one of 10 members of Harvard geneticist George Church's Personal Genome project in today's Wall Street Journal.
The project's goal is to recruit 100,000 volunteers whose information will be public for anyone to use, whether for research, their own healthcare or commerce, she says.
She worries about the thousands that will follow the first group willing to post not only their genomes, but also their medical records and answers to extensive questionnaires on the Internet for all to see.
"The 10 of us are fairly well informed, and we know whom to turn to for help if we get an anomalous result," she writes. "But what if the 99,999th person has something alarming in his medical records? This is a research project: We will be careful not to give clinical advice or diagnoses, which could subject us to additional regulation."
Despite that concern, she has faith in the project's goals.
"No one said it would be easy, but the knowledge from our project, and with luck from many others, will ultimately lead to better information that will be there for anyone to use," she concludes.