What is going on at the Personal Genome Project UK ?
So, the Personal Genome Project has been in hot water recently because of the huge privacy blunder they did by releasing participants names in the mailing list which they have now issued a public apology for... (http://personalgenomes.org/uk/email-storm-incident-and-apology).
But despite the trepidation I still though I would like to participate and after a huge convoluted application process I finally got registered.... Hurray!
However, someone needs to take the reigns on this thing and put it in the right track soon because it currently is a train-wreck!
Here is why:
After I got registered I decided to fill in my profile and contribute my medical data. I believe only if the participants are wiling to share this type of information will a huge sequencing project like this be able to succeed in bringing about new discoveries... but the webpage is simply unusable. Someone just copied the Harvard study codebase (http://www.personalgenomes.org/harvard) and so the page for a UK based study, funded by the UK taxpayer is completely unusable by UK citizens!!!!
1) The Personal health records page fails to import your personal health record file
They claim to support the import of CCR files (Continuity of Care Record files) and they even describe how you can use Microsoft HealthVault to add your information and produce the required file to submit to them... However when you go though the trouble of doing so...
here is the message you get:
2) All forms requiring addresses are in the United States!This one is particularly damming! For a UK based study, paid for by the UK taxpayer you cannot add your address information to you profile, or indicate your geographical origin because all forms require you to add the US state... don't believe me ...look at the screenshot:
3) Impossible surveys:
They request you to fill in 2 surveys: Geographical information and Absolute Pitch Survey but the first one requires you to select a US state, and the second one ... well this happens:
For such a high profile project, they will be spending millions doing sequencing ... I am certain they could send a tiny bit of that money making a website that has some minimal functionality!
All of what I am detailing in this blog post has been submitted to them by their contact email... but you guessed it ... it is not working!
If they are as careless with our data as they are being with the development of their website we are all in deep trouble!