Harvard Wants Your Genome, But Warns of the Privacy Risks

Harvard University’s Personal Genome Project is seeking volunteers willing to “share their genome sequence and other personal information with the scientific community and the general public.”

In 2001, Harvard’s Human Genome Project made history by releasing the first draft of a complete human genome. Now Harvard is seeking 99,999 volunteers who are willing to ‘show’ their genomes in public as part of its Personal Genome Project.

The Personal Genome Project is premised on the notion that “many individuals will want to get their own genome sequenced so that they may use this information to understand such things as their individual risk profiles for disease, their physical and biological characteristics, and their personal ancestries. To get to this point will require a critical mass of interested users, tools for obtaining and interpreting genome information, and supportive policy, research, and service communities. To catalyze these developments, [Harvard] launched the Personal Genome Project.”

While potential participants may be understandably excited about the possibility of being part of history, they should proceed with caution. As the Personal Genome Project warns, an individual with enough knowledge and malicious intent may use a participant’s genome information to (as quoted below) cause a great deal of mischief, including the following:

  • Infer paternity or other features of the participant’s genealogy
  • Claim statistical evidence that could affect employment or insurance or the ability to obtain financial services for the participant
  • Claim relatedness to criminals or incriminate relatives
  • Make synthetic DNA corresponding to the participant and plant it at a crime scene
  • Reveal propensity for a disease currently lacking effective treatment options

Tomorrow’s blog will address a recent federal law that is aimed at mitigating some of the potential harm that could come to one if his or her genetic information becomes known.

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