Back in September 2014, I tried to sign up with the Personal Genome Project, based at UCL in its UK incarnation (Harvard Medical School in the States). Sadly, this proved so popular that admissions had closed by the time I tried. But now they're open again and I've signed up!
It's a process which selects for both intelligence and perseverance. An online exam has to be passed testing your understanding of their ethics policy, the risks and dangers as well as your basic understanding of genetics. The whole thing took me an hour and a half.
They try to scare you off:
"Unanticipated uses of your data and cell linesAnyway, I'm good with all that.
"The list of potential uses of your data and cell lines by other individuals is diverse and sometimes worrisome. The benefit of these things is that other researchers will use them in their own work, greatly facilitating the process of scientific research. Other researchers might also create their own interpretations of your genetic data -- and these could make incorrect claims regarding your predisposition to traits and diseases that we cannot control.
"Someone might match your public data against other genetic databases to find matches for yourself or relatives - this includes criminal and forensic DNA fingerprinting databases as well as other genetic research studies.
"More nefarious uses are also possible, if unlikely. DNA is commonly used to identify individuals in criminal investigations. Someone could plant samples of DNA, created from genome data or cell lines, to falsely implicate you in a crime.
"It’s currently science fiction -- but it’s possible that someone could use your DNA or cells for in vitro fertilization to create children without your knowledge or permission, or to create human clones."
Hopefully the UCL process will now run and at some point I will be asked to provide a DNA sample.
"You may be invited to provide additional tissues or other specimens as approved by the study and the UCL REC ...Under 'Benefits' the documentation states:
"Description of certain specimen sample collection procedures:
"(i) A skin punch biopsy (about 3–4 mm in diameter) is collected from the underside of the upper arm or hip and requires local anaesthesia. Anaesthetic cream is applied and covered with a bandage for 45–60 minutes then wiped off and swabbed with alcohol to sterilise the area. Then a 3‒4 mm skin biopsy is obtained. A bandage and antibiotic ointment is applied.
"The ... skin biopsy may involve pain, bleeding and/or fainting, and may also cause temporary bruising and/or infection at the site of puncture. Some degree of permanent scarring can be expected from the skin biopsy procedure."
"ARTICLE VII: BenefitsSo cool.
"7.1 No benefits to you
"You are not likely to benefit in any way as a result of your participation in the PGP-UK."