Posts tagged ‘privacy’

Personal Genome Project

Private companies offering to decode your genome for a price generally reaching thousand dollars exist and become famous nowadays. What is less known, is the Personal Genome Project, which is more a scientific project than a business project. The aim is to get “a critical mass of interested users, tools for obtaining and interpreting genome information, and supportive policy, research, and service communities.” In other words, the PGP offers you to decode your genome for free. There are obviously counterparts to that. Your data will be used by scientists to perform research on it:

We believe individuals from the general public have a vital role to play in making personal genomes useful. We are recruiting volunteers who are willing to share their genome sequence and many types of personal information with the research community and the general public, so that together we will be better able to advance our understanding of genetic and environmental contributions to human traits and to improve our ability to diagnose, treat, and prevent illness.

Although this is an interesting project, with ethical considerations and almost philanthropist purpose, we draw the attention of our readers on several points:

  • First of all, PGP do not guarantee anonymity.
  • PGP not only needs your DNA, but your medical records too and will ask for many details (allergies, immunizations, medical history, medications, physical traits and measurements, diet, ancestry, lifestyle, and environmental exposures). Participants will be asked to periodically update and add to this information.
  • No result is guaranteed
  • PGP will make use of your data for a period of 25 years.

People who want to get their own genome decoded still have the choice: a free decoding solution with no guarantee of results or privacy, or more expensive solutions with at least a high level of privacy and some results. The advantage of PGP still may be that with this 0$ offer, a large cohort of patients could be constituted. And the strength of genomic studies always relies in the number of samples available.

July 1, 2008 at 11:47 am 1 comment


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