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.
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.
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.
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.