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You are in Human Genetics → Genes and the NHS → A DNA database in the NHS? → What you can do

What you can do

Opting out

Medconfidential has published information about how to opt out of the Government's plans sell all NHS England medical records to private companies. It is urgent to opt out now if you do not agree with the plans, as it may not be possible to withdraw your private medical information later on. Although your DNA sequence is not yet included in your records, it is expected that this will be added later on.

You can also fax your GP to opt out.

Doing more

You should also contact your MP if you are concerned about the Government's proposals to allow your DNA to be sequenced and stored without your consent in the NHS and information in your electronic medical records to be shared with private companies.

Solving the problem requires an "opt in" not an "opt out" system for research, so you know who is using your health records and genetic information for what purposes and are asked for your agreement.

Things you could point out to your MP include:

• Storing your DNA sequence in your medical record would allow a DNA database of the whole population to be built by stealth. Anyone with access to this database (including the police or overseas security services such as the NSA) could track you using your DNA and identify your relatives.
• A DNA database of the whole population cannot be made anonymous: anyone with access to it will be able to work out the identity of individuals even if they are not given names and addresses.

• Legitimate medical research involves seeking your informed consent, so you know what research is being done by whom and why. There should be an "opt in" not an "opt out" system so you know who is getting your data and how they are allowed to use it.
• There are considerable commercial interests in making personal genetic risk predictions in order to sell medicines and other products to healthy people: most of these predictions will be unreliable and misleading. The plan is to feed risk predictions back to individuals via online medical records once they have been set up: at this point the predictions will be used for marketing and will be required by insurers.
• There are many ways in which private companies could misuse this data for marketing purposes rather than legitimate medical research. Statistical "research" done using the data is likely to be used for personalised marketing and mis-selling of medicines and other products.

• The costs of building such as database and expanding the number of healthy people who receive medication could bankrupt the NHS.

The most effective thing to do is to ring your MP's constituency office and ask to make an appointment to see him or her, but you can also write a letter or send an email.

You can find your MP on the They Work for You website or on the UK Parliament website. You can also email your MP directly from the Write to Them website.

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