DNA data of babies could be hacked or sold, ethics expert warns

Stop screening DNA of healthy babies because data could be hacked or sold by Governments in future, ethics expert says

  • Expert warns projects to harvest genome data from newborns are unethical 
  • He referenced plans by the UK Government to harvest data from 200k newborns
  • The data could be abused by insurance companies and law enforcement he says
  • Other experts argue genome sequencing will improve the health of all society 

Screening the DNA of healthy babies could lead to the data being misused and sold to private firms in the future, an expert warned today.  

More than 200,000 British newborns are to have their genome sequenced as part of a Government trial announced earlier this year.  

The process involves storing a person’s entire genetic code on a database to look for signs of rare genetic diseases, with the hope of improving the health of future generations.

Some scientists say it could provide advance warning of people’s genetic risk of health conditions such as cancer and heart disease years before they strike, enabling doctors to prescribe treatments as early as possible. 

But Professor David Curtis, an expert in genetics from the University College London, has warned projects to collect genetic data from newborns are unethical as the data could be used in unforeseen ways in the future.

One of these could see people with genetic disorders discriminated against by employers or health insurance companies, he said.  

An expert warns plans to harvest genetic data from 200,000 British babies raise several ethical problems, from abuse of the data by future Governments to issue of consent. Other experts however argue that only by sequencing the genomes of all newborns will the full potential of the technology to improve health be realised 

He referenced plans by the UK Government owned company Genomics England which announced in September it would proceed with a project to screen 200,000 British babies for genetic diseases. 

Genomics England’s Newborn Genomes Programme aims to explore the potential use of whole genome sequencing to screen for a variety of childhood-onset rare genetic conditions and how caring for them could affect the NHS.

Whole genome sequencing allows researchers to read all the little bits of code that make us who we are.

The human genome is composed of more than three billion pairs of building-block molecules and grouped into some 25,000 genes.

It contains the codes and instructions that tell the body how to grow and develop, but flaws in the instructions can lead to disease.

Many argue giving patients the blood tests will allow doctors to spot rare diseases caused by genetic mutations.

Former Prime Minister David Cameron set-up a project to sequence 100,000 genomes for NHS patients with a known rare disease or cancer.  

The first decoding of a human genome – completed in 2003 as part of the Human Genome Project – took 15 years and cost £2.15 billion ($3bn). 

Other aims of the project include understanding how genomic health data could be used to for research to develop new treatments and exploring the risks and benefits of storing an individual’s genome over their lifetime.

Writing in the British Medical Journal, Professor Curtis warns that once genome data exists it could be used for a variety of unethical purposes in the future we cannot predict. 

One of these is to discriminate people with health conditions from health insurance, something that already happens in the US.

Other concerns regard the potential use of the data by law enforcement who could use a genetic database to track down suspects using the DNA of their relatives, he claims. 

It has previously been likened to Minority Report, a 2002 film starring Tom Cruise, which saw police use technology to catch criminals before they commit crimes. 

Professor Curtis also said it was unethical to take the genetic data from children too young to consent.  

‘A person’s genome is a vast quantity of personal data, and no grounds justify routinely acquiring this from all citizens before they are old enough to have the capacity to provide informed consent,’ he writes. 

‘Do we trust that the governments we will have in 20 years’ time will keep the data secure and refuse to allow uses that we would currently regard as unethical?’.   

Writing in the same piece in support of genome screening babies, Dr Leslie Biesecker from of the US National Human Genome Research Institute (NHGRI) argued that it will help save lives.

But rather than newborns’ genomes being sequenced for all diseases from birth, he argues for a ‘phased’ approach. 

This would see a baby’s genome sequenced at birth for health conditions that need immediate treatment, and then sequenced again in their teenage years for disease that appear at this age, and so on into adulthood.

What is the Newborn Genomes Programme?

The Newborn Genomes Programme is a soon to be launched project by the UK Government owned company Genomics England.

The project will collect 200,000 genomes from babies in the UK and analyse them for a set genetic conditions which may affect their early life. 

This, the company says, will enable them to access treatment pathways at the earliest opportunity giving them and their families better health outcomes and quality of life. 

With parental consent the babies’ ‘de-identified’ genomes will also be added to the National Genomic Research Library which will enable both academic and commercial researchers to use them to develop new treatments. 

The project will also explore the ethical and practical implications of storing an individual’s genetic information over their lifetime.

Genomics England have insisted the data will be kept securely and only be accessible to vetted researchers.  

Any such rollout of genomic data collection would need both appropriate safeguards and and opt-outs, Dr Biesecker said. 

If these were in place then the full potential of genetic diagnostics to help people from the day they born could be realised, he argued.

‘By embracing a health ecosystem that offers universally available routine newborn genomic screening, we can maximise learning to ensure that the benefits of genomics reach the broadest range of people, minimising disparities and bringing greater health to all,’ he said.

Whole genome sequencing allows researchers to read all the little bits of genetic code that makes someone who they are.

The human genome is composed of more than three billion pairs of building-block molecules and grouped into some 25,000 genes.

It contains the codes and instructions that tell the body how to grow and develop, but flaws in these instructions can lead to disease or increase the risk o developing health conditions.

This is not the first time that the merits and perils of governments collecting genetic data have been debated.

Civil liberty watchdogs raised the alarm in 2018 over United Arab Emirate plans to genetically test every individual living in the city of Dubai, including British expats. 

The idea was to help identify genetic diseases, or risk of diseases before they happen enabling the earliest possible treatment.

However, privacy campaigners argued such data could be misused and would be at potential risk from hackers. 

There have also been concerning reports from countries like China of genome data on citizens being collected on a mass scale.  

Plans to DNA test 3 MILLION people living in Dubai – including British expats – raised fears of data abuse

Controversial plans to genetically test everyone living in Dubai raised fears that the privacy of 3million people could be used to discriminate.

In an unprecedented move, officials in the sprawling metropolis in the UAE have announced they want to create the world’s largest genome database for its residents and British expats.

They claim it will spot diseases before they strike – similar to Minority Report, a 2002 film starring Tom Cruise, which saw police use technology to catch criminals before they commit crimes.

But privacy campaigners have warned the information obtained through the ‘concerning scheme’ could be violated.

Humaid Mohammed Al Qatami, director general of the Dubai Health Authority, told the Khaleej Times the first phase of the project should be done by 2020.

He said: ‘The authority is looking to target all residents of the emirate of Dubai, focusing on UAE nationals in the first phase of implementation.

‘The project’s timetable extends over 24 months, during which we will be collecting samples, analysing DNA sequences, and recording the results in the data bank.’

The DHA warns there are 220 known genetic diseases in the Middle Eastern country, and are responsible for 70 per cent of infant mortality.

Thalassaemia, a deadly blood disorder, is common in the UAE. The country already screens couples before they marry to look for genetic disorders.

However, Silkie Carlo, director of Big Brother Watch, told MailOnline at the time that: ‘Dubai’s plans are extraordinary and serve to remind us of the risks of any Government hoarding DNA.’

‘Without doubt, the risks are especially high in a country that lacks electoral democracy, has a problematic criminal justice system and fails to uphold basic rights.’

‘Even in the hands of employers or insurers, genetic information can be used to discriminate against people.

‘The health benefits of mass genetic profiling have long been disputed and I sincerely hope the UAE authorities give British expats the ability to opt out from this concerning scheme.’

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