WC Archive

The first million base pairs of the human genome took four years to decode; the second million base pairs took four months. The rate of improvement in the computational ability to sequence DNA base pairs is progressing at a rate comparable to -- and occasionally faster than -- the famous "Moore's Law" doubling curve, a testament to both improvements in processor capability and improvements in process. Within the next ten years, possibly by the end of this decade, biologists will be able to sequence fully a given DNA sample in a matter of minutes. In other words, it will soon be possible to have not just a human genome sequence, but your human genome sequence. Among the many questions which will result will be who owns the DNA, and who will own the process of telling your what your DNA holds?

The Personal Genome Project (PGP), at the Harvard Molecular Technology Group & Lipper Center for Computational Genetics at Harvard Medical School, attempts to answer at least one of those questions. The PGP is an effort to make sure that an open, public domain approach to personal genome sequencing has a hold on the space, so as to better compete with the inevitable commercial efforts. The project is relatively new, and is still seeking participants.

As the PGP technology is advancing rapidly we would like to begin discussing the best ways to recruit people to have their genome sequenced (in part or whole). This web page is a work-in-progress draft. Volunteers for designing this plan as well as potential volunteers for genome sequencing are welcome. This may involve ethicists, attorneys, database-security experts, medical records, management, fund raising, public health, public relations, education, etc.

The founders of the PGP published recently (PDF) in Nature Reviews Genetics an examination of recent and potential advances in DNA sequencing, including an argument for the likely existence of a $1,000, 90 second genome sequencing system before 2010. The article looks beyond the technology to discuss the clinical, political, and ethical aspects of the ability to sequence an individual's DNA cheaply and quickly:

In the case of Moore versus Regents of the University of California, [...] the court rejected the idea of [an individual's] property rights to the cells themselves, and that informed consent implies a right to information that is derived from the biological material itself. Fewer than half the states in the United States require informed consent for genetic testing, and there are no US federal laws that ban genetic discrimination for medical insurance or in the workplace. [...] A second category of explicit legal concern is that of patent law. In the United States, Europe and Japan, only portions of DNA that are non-obvious, useful and novel can be patented. ULCS [ultra-low cost sequencing] technologies will probably not be able to avoid the resequencing of patented genes. Interesting legal issues arise around the question of patients’ rights to have analysed (or to self-analyse) their own DNA sequence versus corporate interests that presumably own the rights to that analysis.

"Interesting legal issues" indeed. In one of my recent science fiction scenario books, Broken Dreams,I posited the implementation of a "Genetic Rights Management" system, allowing those companies which develop advanced biotechnologies to prevent the unlicensed duplication of their patented gene sequences (such as by having a baby). What the PGP team warns of, however, goes beyond even that: your right to even read your own DNA could be challenged if your genome contains sequences already patented by a biotech firm.

A public domain genome effort like the PGP is an attempt to forestall such a future. By making the technology for gene sequencing fast, cheap and, ultimately, out of any company's control, the Personal Genome Project serves two vital purposes: making knowledge as widely available as possible, and keeping knowledge as free as possible. We wish them success.