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(50) See PERSONAL GENOME PROJECT
, http://www.personalgenomes.org/ (last visited Apr.
Another effort to increase the number of genomes accessible for public research is the Personal Genome Project
Similar biobanks have emerged in the United States, including the Personal Genome Project
, the NuGene Project, Mayo Clinic Biobank, and Kaiser Permanente's Research Program on Genes, Environment and Health.
As a director of 23andMe, a consumer genetics start-up, and a participant in the Personal Genome Project
research study (http://www.personalgenomes.org/public/3.html#Data_Sets), I have been studying how genes affect one's chances of getting various diseases, and how much impact behavior can have on those chances.
Still, scientists and legislators have been working to anticipate the coming deluge of sequencing data: See Harvard's Personal Genome Project
, which seeks to sequence 100,000 genomes, or the recently passed Genetic Information Nondiscrimination Act, which bars insurance providers or employers from using DNA sequence data against policyholders or employees.
It is based on the first 10 sequences of the Personal Genome Project
, which aims to sequence the genomes of up to 100 000 individuals and integrate complete phenotype and other biological data (45).
This Article examines the risks and benefits of this public genomics model in the context of an ambitious genetic research project currently under way--the Personal Genome Project
. This Article also (i) demonstrates that large-scale genomic projects are desirable, (ii) evaluates the risks and challenges presented by public genomics research, and (iii) determines that the current legal and regulatory regimes restrict beneficial and responsible scientific inquiry while failing to adequately protect participants.
It is also the answer to another question I hear a lot because of my work on human genetics through 23andMe ( www.23andme.com ) and the Personal Genome Project
( www.personalgenome.org ): If you learned you had a high chance of developing Alzheimer's in a few years, what would you do?