In 2001, the Human Genome Project published a working draft of the human genome sequence, thus providing unprecedented advances in our knowledge of how a human works. The PGP makes sequencing personal. Just like the personal computer brought information technology to individuals, the PGP brings DNA sequencing to individuals.
So a while back I registered to the Personal Genome Project after they initally decoded the genome of their first ten participants and called for 10,000 volunteers to sign up for the potential to share their genome sequence and other personal information with the scientific community and the general public. (View example public profile pages here) To be considered, volunteers must pass an entrance exam to ensure a clear understanding of what it is they are getting themselves into and have an understanding of genomes and DNA and the bigger ethical picture of the Personal Genome Project.
I am currently working my way through the PGP study guide provided by the Alan and Priscilla Oppenheimer Foundation and hoping to fill in the gaps about the DNA and genome sequencing basics as well as use this as an insight into the PGP’s ethical considerations and risk legislation of sharing personal details to the public. I am not too sure if I really am aware of the implications and would say that this process is informing my ethical and moral position on predicitve gene testing and the PGP.
Question: Why do I have to take an exam to participate in the PGP?
Answer: The PGP takes informed consent very seriously and believes that an exam is the best way to ensure that you have the knowledge necessary to understand the benefits and risks associated with participating in the project.
For those interested in contributing their genetic material to the PGP check out their participation page
To [George] Church, open consent isn’t just a philosophical consideration; it’s also a practical one. If the PGP (Personal Genome Project)were locked down, it would be far less valuable as a data source for research — and the pace of research would accordingly be much slower. By making the information open and available, Church hopes to draw curious scientists to the data to pursue their own questions and reach their own insights. The potential fields of inquiry range from medicine to genealogy, forensics, and general biology.
And the openness doesn’t serve just researchers alone. PGP members will be seen as not only subjects, but as participants. So, for instance, if a researcher uses a volunteer’s information to establish a link between some genetic sequence and a risk of disease, the volunteer would have that information communicated to them.