News Mass DNA databases

[rynnor]

Obviously there's already a large police database but there are other initiatives trying to get hold of peoples genomes - the problem is most people do not realise how much info there is about them and the sorts of consequences there could be for them and their families.

http://www.bbc.co.uk/news/health-24834375

The Personal Genome project - these guys at least admit there are consequences but then they want to pass your data around the world.

http://www.genomicsengland.co.uk/100k-genome-project/

This NHS one concerns me more - the NHS are not exactly great at informed consent and very poor at mentioning consequences.

They are targeting cancer patients and rare disease sufferers - these people are vulnerable and reliant on the doctors which is not a great basis on which to make a free choice.

In theory its anonymous but it may still be possible to identify individuals to their detriment.

Additionally if a relative gets done you could see increases to your premiums for life insurance etc.

I think we really need a wider public debate before this stuff just creeps in?

I see Saudi are doing their own 100k - http://www.genomicsengland.co.uk/100k-genome-project/

I'm sure it wont be abused by their govt...

 

[Chilly]

A friend of mine who now works at google selling adverts did his phd in statistical genetics at Oxford. He'd write programs to digest tonnes of genomes and disease histories and come up with correlations between diseases and key genes. To do this properly, you need huge sample sizes (100k is pathetically small, frankly). I think it's an excellent idea, but as you say privacy needs to be a core principal of any program such as this. It's a tough nut to crack and things like premiums changing probably need to be legislated against so that it's illegal to use that information for that purpose. That's what the ACA in the US just did, btw.

 

[rynnor]

It's a tough nut to crack and things like premiums changing probably need to be legislated against so that it's illegal to use that information for that purpose. That's what the ACA in the US just did, btw.

We should do the same though there are lots of other consequences like employers screening out people with higher chances of certain diseases etc. Without strong legislation we risk creating a genetic underclass.

This was an interesting book the Mrs read recently about the uninformed use of one patients genetic material - http://rebeccaskloot.com/the-immortal-life/

 

[Chilly]

I'm sure the NSA can find a way to misuse genomes, too!

And, actually, in the UK we're quite well covered already in law. The 2010 Equality Act does several things, including:

Use of genetic test results by employers will be restricted by the Equality Act 2010, which restricts what employers can ask about in pre-employment medical checks. It means that employers can only ask for information that is directly relevant to the applicant's ability to carry out the work, or needed to make 'reasonable adjustments' to the workplace to enable a particular person to work there (as required by law).

and

A voluntary moratorium, agreed between the Government and the insurance industry, also limits insurers' access to genetic test results. However, it is unclear what will happen when the moratorium ends in 2017.

I imagine legislation will be created to make that moratorium law.

 

[Overdriven]

On a related note, was in hospital yesterday and I signed up to one of these things (They took lots of blood) for genetic markers in Crohn's disease. Good idea, if managed properly. See above reasonings about privacy.

 

[Raven]

I don't have a massive problem with it if it is managed properly and not later abused or shared with people who should not be allowed anywhere near it...which I imagine will happen soon enough.

 

[rynnor]

I don't have a massive problem with it if it is managed properly and not later abused or shared with people who should not be allowed anywhere near it...which I imagine will happen soon enough.

Someone will lose a laptop with the whole thing un-encrypted within weeks - this is the NHS

 

[Chilly]

TBH I expect it's already been given wholesale to the NSA, GCHQ and whoever else asks for it in the correct Club in Mayfair.

 

[Lakih]

I'm blissfully ignorant about it, I'm more afraid someone will get hold of my e-mail account then a sample of my genes.