'UK DNA database by stealth' proposed in £100m NHS project

Nice little earner, for some.

"...the market is ripe to be exploited by private companies hoping to cash in by using these rich datasets .."

Datasets provided by me, and other NHS patients , via an organisation funded by me and most other adult citizens of the UK. That's my data. You want to make money from it - you pay me an agreed percentage.

However, I suspect that senior figures in the medical establishment, the Civil service and politicians have already got themselves lined up for 'advisory' positions on several boards, so it'll all go through without objection.

if you wanna see what hardcore censorship looks like, check out this shocking example:

http://forums.theregister.co.uk/forum/1/2012/12/07/tvshack_fine/

Counselling?

I wonder if they're really prepared for all the consequences of this.

If a patient's individual DNA is available during personalized treatment, how do they deal with things when they're treating some physical congenital problem, check the DNA report and see that the person is carrying a BRCA gene and is at a higher disposition for breast cancer?

Of course some people can deal with this easily. But others will not. The psychological impact of telling a new mother that not only is there a significant risk of her developing cancer, but that she might also have passed the gene on to her baby could be severe.

Do you tell the patient without allowing them to decide if they want to know? How do you tell a patient they might want to think about being tested without it being obvious that you already know? How do you ethically withhold the information once you know?

What about when we discover a new gene linked to another cancer? Is there an obligation to tell every carrier of that gene? How do you prepare people for that? Is the NHS equipped to deal with 30,000 requests for a hysterectomy in the space of a couple of weeks? Can you ethically leave these people to develop cancer, knowing they're at a significantly heightened risk? Will folk sue because the information was withheld?

Yes, but...

"apart from when it is used for an individuals own care" means it won't be anonymised at all.

And will this massive database fit on a flash memory thingy to be lost somewhere on the tube?

Of course the data wont be available to just anyone, it will be stored securely in the cloud and managed by a subsidiary of an American company no doubt, so no worries there then.

2+2=29472958385

I'm worried Tesco is going to run out of tinfoil.

Firstly let me say that this is a topic close to my professional occupation, so I have a fair idea what would be involved.

This announcement relates to the use of whole-genome sequence data (as opposed to single gene data, already in widespread use) in supporting clinical decisions about which treatment a patient should receive. This pretty much eliminates any insurance concerns, since we are talking about patients who have already been diagnosed with a disease having a genetic component - like cancer. Even if it weren't, there is a moratorium on the use of genetic information in insurance, in place since 2001 and continually renewed - currently lasting upto 2017.

The current methods of determining treatment are in many ways archaic, and this is simply the next and frankly necessary step in improving patient care. It is true that a person's genome is very sensitive data, but we already have these issues relating to research subject data, for which there is an existing and well thought out data storage strategy (I won't go into details). Applying the technology to clinical care in the NHS is effectively a scale-up problem (from the data side of things at least - there are actually huge clinical challenges still).

I think it's fairly safe to assume that there is unlikely to be "a database" - that's why "data infrastructure" is used. The raw data for a complete human genome is reasonably large (~200GB), with much additional data required. It is not necessary to keep all this in order to be useful clinically; rather, a derived summary of the differences between your genome and a reference genome is more likely to be the source material for a clinical decision. But to get there, you need an infrastructure - where is the sequencing performed - at a private facility? What about the analysis, in a regional or national centre? And the clinical decision - back in the hospital? It is even by no means a given that the data will even be kept at all for any length of time. It could be destroyed after a course of treatment, for example.

Put simply, a secure infrastructure for storing and analysing the data still needs to be built, this would be a closed system and is a far cry from your doctor having your genome on a USB stick. There is simply no need for the data to ever leave the walled garden, and no real need in particular for it to be "a database" in the sense of it all being in the same place.

How do I change it?

If someone gets my password I can change it.

Will the government make it easy for me to change my DNA every time the database is penetrated or is handed over to the security services?

Surely they wouldn't put me in a position where once my extremely private data is compromised I can never ever repair the damage?

Opt out?

Where is the opt out???? Or the only way to opt out is not to use NHS anymore?

Never trust anybody, especially the government with your personal data (and what's more personal than a DNA?)

How can you anonimise DNA data??? Replace it by random gene???

Its already here...

A DNA sample is already taken from newborns [with parental consent] to test for some very rare genetic disorders. You will note there is no mention of destruction of the sample or deletion of the record on the following page...

http://www.nhs.uk/chq/Pages/818.aspx

AC obviously

/tinfoil

Tabloids

Well this will make life easier for tabloid newspapers, who'll be able to uncover more "secret love children" of the stars, as and when they bribe their way into the database.

Oh, and due to the high levels of scientific and medical training of yer average tabloid hack, prepare for them to name and shame guilty sex offenders before the police have even have that person in the frame based on their own notion of what constitutes a DNA match.

The police will have access to this database, as will medical staff - both of which are primary sources of information for tabloids.

HAVE A GLASS OF WARM MILK AND GO TO SLEEP

Our scientists and technocrats will do the rest.

Godwin

<Insert your own totalitarian reference here>

Cameron's DNA?

100% match with the DNA of a short rectangular piece of wood.

Keep me alive as long as possible...

Most deaths are down to heart or cancer. Fix that and we can all look forward to years of undignified and costly dementia and incontinence. Thanks.

Hello Mrs AGCATGCTGCAGTCATGCT.....

How is Mr ATGCTAGCATGCTGCAGTCATGCTGCAGTCATGCT... today?