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DNA databases – nothing to lose or nothing to gain?

Natasha Little of the Royal Society of Biology discusses the work of DNA data pioneer, Sir Alec Jeffreys

Ahead of the Museum’s Our Lives in Data exhibition, Natasha Little of the Royal Society of Biology discusses the work of DNA data pioneer, Sir Alec Jeffreys.

Your DNA is unique. But how much ownership and privacy do you feel about your genetic code? Would you be happy to be on a national police database? If it could be used to predict a future illness, would you want to know the results?

Last month Professor Sir Alec Jeffreys FRS Hon FRSB, the inventor of DNA fingerprinting, discussed his doubts about the prospect of a national DNA database at a Royal Society of Biology event at the Science Museum.

In 1984 Sir Alec had a ‘eureka moment’ when he discovered a method of identifying individuals using their genetic code during blue skies research at The University of Leicester, which you can find out more about in the Museum’s Who Am I? gallery.

Soon after, Sir Alec’s lab was asked to help the Leicestershire police in the investigation of two rape and murder cases. This led to the very first use of DNA evidence in a criminal case, in which it exonerated a man who had given a false confession. The guilty man was found soon after through a process of screening thousands of men who lived locally.

The latest technology now gives forensic geneticists the ability to analyse minute amounts of biological material, even after environmental exposure, and determine the sequences of several hundred fragments of DNA from a crime-scene sample in one go – revealing the person’s ethnic origin, and hair, eye and skin colour.

More than 17,000 offences are now solved each year thanks to genetic fingerprinting. It has been used to reunite parents with children separated by natural disasters, free people on death-row and identify plane-crash victims. Sir Alec estimates the technology has touched 50-70 million people worldwide.

So, if you’ve got nothing to hide, why would you be against your genomes, and everyone else’s going onto a compulsory national DNA database?

At the Royal Society of Biology event Sir Alec said this position was ‘naïve and very misleading’. He went on to say:

‘It would be expensive. It would also be a risk to the individual. I’ve never been convicted of a criminal offence and nor will I commit a crime. If my DNA is on the database, some glitch could happen, whereby my DNA profile might come into a police investigation. I would argue it is not neutral.’

Sir Alec also discussed the problem of being stuck with the current DNA database technology established in the 1990s. ‘If you change the DNA platform with a whizzy new technology that invalidates your database immediately; you’ve got to go back and re-test everyone on that database.’

Even if the database technology was fool proof and future proof, further problems face its use in the courtroom. Many psychologists have suggested that jurors are not very good at understanding the complex science and associated probabilities presented as part of expert testimony about DNA profiles. Courts will also be faced with increasingly tiny, degraded trace amounts of DNA, where innocent explanations are often plausible.

At one point the UK DNA database contained over 6 million genetic fingerprints (10% of population). This included 1.5 million entirely innocent people who had been arrested but not charged or convicted. Sir Alec pointed out that this was blatantly discriminatory ‘which you could establish certainly in terms of ethnic origin’.

In 2008 The European Court of Human Rights ruled that the practice of keeping DNA profiles (and fingerprints of the non-DNA kind) from arrested individuals, regardless of their guilt or innocence, was a violation of people’s ‘right to a private life’ (article 8 of the European Convention on Human Rights). This led to the innocent people being removed from the database. The Protection of Freedoms Act 2012 attempts to provide a better balance between the rights of individuals and the security of society.

Alec Jeffreys and Alison Woollard. Credit: Royal Society of Biology
Alec Jeffreys and Alison Woollard. Credit: Royal Society of Biology

Sir Alec highlighted the continued importance of DNA evidence in the fight against terrorism, for example after the Paris attacks. However he still has ‘serious doubts’ whether that merits the a database of an entire population, as was quickly legislated for in Kuwait after a bombing last year.

The United Arab Emirates also passed legislation for a mandatory database of everyone living in the country years ago. However Sir Alec pointed out that many kinds of crime, for example financial, won’t leave a DNA trail. ‘What else could you do?,’ he added. ‘You could scan the entire population for every single instance of non-paternity and identify the true father… in a Muslim society that is dynamite! I’m not suggesting they would do that – but that is a risk.’

Sir Alec also expressed horror at the fact that in some countries parents or the state are encouraging checking for congenital problems and organising marriages to minimise that risk.

On testing for genetic predispositions to diseases and the prospect of precision medicine, Sir Alec said, ‘maybe we can recommend either medication or a change in lifestyle that could ameliorate genetic risks. That may be perceived as really good news, others may see it as the NHS playing Big Brother with your genome’, adding, ‘we are all full of genetic defects – they keep you going but they will kill you in the end!’ Health insurance companies, Sir Alec said, don’t ever and should never have access to your genetic data, as it would be ‘blatant discrimination’.

So who will decide where these limits are placed? The answer will come from ‘social discussion and legislation’, said Sir Alec. ‘Science and technology often runs way ahead of ethical and social debate and certainly of political decision making. Scientists are very good at coming up with whizzy new ideas. But don’t rely on us for ethical decisions. It’s up to you.’