Personal genomes in progress: from the Human Genome Project to the Personal Genome Project

• Published in: Dialogues in clinical neuroscience Vol. 12; no. 1; pp. 47 - 60
• Main Authors: Lunshof (Co-first author), Jeantine E., Bobe (Co-first author), Jason, Aach, John, Angrist, Misha, V. Thakuria, Joseph, Vorhaus, Daniel B., R. Hoehe (Co-last author), Margret, Church (Co-last author), George M.
• Format: Journal Article
• Language: English
• Published: Neuilly-sur-Seine Taylor & Francis 2010; Servier; Les Laboratoires Servier
• Subjects: Adult and adolescent clinical studies; Basic Research; Biological and medical sciences; Computational Biology - methods; Databases, Genetic - economics; Databases, Genetic - statistics & numerical data; DNA sequencing technology; Electronic Health Records - economics; Electronic Health Records - statistics & numerical data; ELSI; envirome; Environment; Genetic Privacy; Genome, Human - physiology; GET data set; Human Genome Project - economics; Humans; Medical sciences; microbiome; Miscellaneous; open consent; Personal Genome Project; personal genomics; phenome; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; public genome; whole-genome sequencing; Human; Genomics; whole-genome sequencing; Review; envirome; GET data set; Personal Genome Project; microbiome; public genome; phenome; DNA sequencing technology; DNA; open consent; personal genomics; Mental disorder; Genome; Sequencing; ELSI
• ISSN: 1958-5969; 1294-8322; 1958-5969
• DOI: 10.31887/DCNS.2010.12.1/jlunshof

The cost of a diploid human genome sequence has dropped from about $70M to $2000 since 2007- even as the standards for redundancy have increased from 7x to 40x in order to improve call rates. Coupled with the low return on investment for common single-nucleotide polymorphisms, this has caused a significant rise in interest in correlating genome sequences with comprehensive environmental and trait data (GET). The cost of electronic health records, imaging, and microbial, immunological, and behavioral data are also dropping quickly. Sharing such integrated GET datasets and their interpretations with a diversity of researchers and research subjects highlights the need for informed-consent models capable of addressing novel privacy and other issues, as well as for flexible data-sharing resources that make materials and data available with minimum restrictions on use. This article examines the Personal Genome Project's effort to develop a GET database as a public genomics resource broadly accessible to both researchers and research participants, while pursuing the highest standards in research ethics.