Expert warns that screening the DNA of healthy infants could result in data misuse and being sold to third parties.  

A Government trial that was announced this year will see more than 200 000 British infants have their DNA sequenced.  

This involves the storage of a person’s whole genetic code in a database. The goal is to search for rare genetic diseases and improve the health of the future generations.

Scientists believe it may be able to predict the likelihood of certain health problems such as heart disease and cancer years in advance, which could allow doctors to start prescribing treatments early. 

Professor David Curtis of the University College London is an expert on genetics and has warned that any projects to gather genetic data from infants could lead to unintended consequences.

One example is when employers and insurance companies discriminate against individuals with genetic conditions, said he.  

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

A British expert warned that the plans to extract genetic data from more than 200,000 babies could pose ethical questions. This includes potential abuses by future Governments and refusals to consent. Experts disagree and argue that sequencing all the newborns’ genomes is the only way to unlock the potential for the technology to improve our health. 

He mentioned plans made by Genomics England (UK Government Owned Company), which in September announced that it will continue with its project to screen British babies for certain 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.


The whole genome sequencing allows scientists to analyze all bits and pieces of the code that makes us unique.

More than 3Billion pairs of molecules are part of the human genome. They have been grouped into around 25,000 genes.

The instructions and codes within it tell your body what to do to grow and develop. However, mistakes in these instructions could lead to illness.

Patients should be given blood tests so doctors can spot genetic mutations.

David Cameron was the former Prime Minister. He established a project that sequenced 100,000 DNAs to help NHS patients living with rare diseases or cancers.  

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.

Professor Curtis warned in British Medical Journal that genome data can be used in unethical ways in the future. 

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

He also raised concerns about the possibility that law enforcement could make use of this data to locate suspects by using their DNA. 

The film has been previously compared with Minority Report, an 2002 movie that starred Tom Cruise. In Minority Report, police used technology to catch criminals in their act before they committed crimes. 

Professor Curtis stated that it is unethical for children to be given their genetic information without 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.

He advocates for a phased approach to sequencing the genomes of newborns for every disease from birth. 

The baby’s DNA would be sequenced from birth to identify health issues that require immediate treatment. It would then be sequenced in teenage years to detect diseases that may develop at that age.

What’s the Newborn Genomes Programme?

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

It will analyze 200,000 genes from UK babies to find out if there are any conditions that may have an impact on their childhood. 

The company claims that this will help them access the best treatment options at their earliest convenience, which in turn, will improve the quality of their lives and the health of their loved ones. 

The National Genomic Research Library will add the babies’ “de-identified” genomes to it with parental consent. This will allow both commercial and academic researchers to access them for new treatment ideas. 

This project also examines the practical and ethical implications of keeping a person’s genetic information for their entire life.

Genomics England has insisted that data will remain secure and be available only to validated researchers.  

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

These would allow genetic diagnostics to be used from the moment they are born, and the potential for helping people with their health issues could be realized.

He said, “By creating a health environment that allows routine newborn genomic screening to be available to everyone, we can maximize our learning and ensure that genomics’ benefits reach as many people as possible, minimising any disparities, and bringing more health to all.”

Researchers can read every bit of DNA that determines who someone is using whole genome sequencing.

Human genome contains more than 3 billion molecules of building blocks and is grouped together into approximately 25,000 genes.

The code and instructions tell your body how to develop. But, problems with these instructions could lead to diseases or worsening of existing health issues.

It isn’t the first time the benefits and dangers of governments gathering genetic data has been discussed.

Watchdogs for civil liberty raised alarm over plans by the United Arab Emirate to genetically check every person living in Dubai. This includes British expats. 

This was done to identify and prevent genetic diseases or the risk of developing them, thereby allowing for early treatment.

Privacy advocates argued however that these data might be misused, and could pose a risk to hackers. 

In China, there have been concerns about genome data being collected from citizens on a large scale.  

There are concerns about data abuse when plans for DNA testing 3 MILLION Dubaians – even British expats, – were made.

Rumours of a genetic test for everyone in Dubai have raised concerns about the possibility that privacy could be misused 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 Mohamed Al Qatami is the Dubai Health Authority’s director general. He told Khaleej Times that the Dubai Health Authority will complete its first phase in 2020.

He stated that the authority was looking at all Dubaians, with a particular focus on UAE nationals during the first phase.

“The project timeline is more than 24 months long. We will be taking samples, analysing DNA sequences and recording our results in the database.

DHA warned that 220 genes are known to be responsible for 75% of the Middle Eastern’s infant mortality.

Thalassaemia, which is a serious blood disease, is very common in UAE. In the UAE, couples are already screened before getting married to check for any 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 in countries that do not have an electoral system, have a dysfunctional criminal justice system, and fail to uphold fundamental rights are high.”

‘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.’