100,000 UK volunteers invited to donate genome to science

[doodah]

After reading this article, including a cheeky quote from a friend of mine , I got quite interested in signing up.

I work in a cardiovascular genetics lab at UCL and so have been through the motions of ethics, insurance implications etc. Although ethics implications and applications (at least for the grant we successfully applied for) are very lengthy, I am glad it is this way round! A Concordat and Moratorium on Genetics exists which "means the results of a predictive genetic test will not affect a consumer's ability to take out any type of insurance" unless the policy is over £500K or they are positive for Huntington's Disease.

I have also taken the 23andME test which should be regarded as a little fun/informative - it seems all too easy for a punter to go on and see they have e.g. E3/E4 for APOE (a gene associated with increased risk for heart disease and alzheimer's, with the E4 variation increasing risk) and make potentially dangerous decisions based on only genetic information with no context.

Which leads me on to the Personal Genome Project UK, a chance to find out some very interesting or dangerous information about you and your family. The risks below would probably put a significant amount off straight away:

• infer paternity or other features of the participant's genealogy
• claim statistical evidence that could affect employment or insurance or the ability to obtain financial services for the participant
• claim relatedness to criminals or incriminate relatives
• make synthetic DNA corresponding to the participant and plant it at a crime scene
• reveal propensity for a disease currently lacking effective treatment options
• Willing to share genetic, health and trait data in a public and non-anonymous manner

I noticed a thread about signing up to paid services from last year but while this has some similarities, I feel it's a different situation due to the nature of the service. Who would sign up and why? Who wouldn't and why? I have signed up for interest and more information; pretty sure my mum or grandmother wouldn't mind, confident I am not the milkman's son and our family is relatively free of cancer, heart disease etc.

 

[Raumarik]

I've already done something similar with a study in Scotland, entire family were invited in so we all went. However it was kept private, this one seems a lot more open and I'd personally be mostly concerned about being identifiable.

I don't see why they cannot anonymise the data whilst still keeping it relevant.

 

[doodah]

A surprisingly small amount of data is necessary to uniquely identify a person by name. For example, a zip code, birthdate and gender may be enough to infer someone’s identity with a high degree of accuracy. One of the most identifiable pieces of information is human DNA sequence: it can be used to predict a variety of medical conditions and traits, like hair and eye color, facial features and even surname.

Because we cannot guarantee privacy and we are committed to sharing data for the advancement of science, we feel the most ethical and practical solution is to collaborate with individuals who are comfortable sharing their data without any promises of privacy, confidentiality or anonymity. We call this “open consent”.

If you are considering enrolling in the Personal Genome Project (PGP) it is important that you understand that your data may become publicly identified, by name, as yours -- even if you exclude your full name or other identifiers like a facial photograph from your public profile. Any hesitation now could be cause for regret later, after it is too late to remove your data from the public domain.

Wonder if you could be a little 'loose' with your post code/name lol?

EDIT:

You would have to be very lax about your privacy! This is one of the profiles on there:

 

[HardwareGeek]

While i must give them credit for making it clear from the start that the data would not be kept private and could lead to pretty terrible consequences for you or your relatives i would like to know exactly why the data cannot be kept private?

Seems like a hard sell because of the privacy aspect, the offer appears to be that you get some genetic testing for free before its commercially available to the public (maybe 5? years early?) at the risk you or you family members could be face discrimination based on the results and/or face arrest and imprisonment for any so far unsolved crimes?

Should lead to some interesting conversations within any families considering this....uhm uncle jo...any reason we wouldn't want the police to have our family DNA... oh.. you did what 20 years ago???

Think i would rather wait the 5 years? and pay for a secure/private testing