Alexandra Chambers | Dark Matters Press | 22nd June 2025
In 2025, the UK government passed the Data Access Bill, legislation that opens the door for whole genome sequencing (WGS) of newborns – starting not just with a drop of blood, but from cord blood DNA. This marks a radical shift in how the state interacts with your child’s biological data – a shift with far-reaching implications for privacy, consent, and autonomy.
🔬 What Is Whole Genome Sequencing?
Whole genome sequencing (WGS) is the process of decoding an individual’s entire DNA – over 3 billion base pairs. Unlike targeted gene tests (which look at a few known mutations), WGS provides a complete map of your child’s genetic blueprint.
This includes:
Physical traits (e.g. eye colour, height, skin tone).
Neurological and psychiatric profiles (e.g. autism, ADHD, sensory sensitivity).
Cognitive traits and abilities or disabilities (giftedness or intellectual disabilities) and learning styles.
Addiction and risk (impulsive) behaviour tendencies.
Violence/aggression predispositions.
Personality-linked SNPs (sensitivity, empathy, anxiety depression, trauma and more).
Disease risk (e.g. cancer risk, heart conditions, rare syndromes).
Nutritional/metabolic pathways (e.g. how your child processes sugars, fats, vitamins).
Fertility, hormone response, sexual development.
Response to pharmaceuticals and vaccines (some people -especially neurodivergents- are more likely to have side effects from vaccines).
This list is not exhaustive, new traits, diseases and personality linked genetics are continuously being discovered.
This is not science fiction -much of this is already known to researchers – it’s simply not shared with the public.
🧬 Cord Blood DNA: Why It Matters
Cord blood DNA is collected at birth, often without full explanation of its long-term implications. It contains pristine genetic material – unaltered by environmental factors – and is ideal for deep sequencing and future biobanking.
Once stored, this data can be:
Accessed indefinitely under broad legal powers.
Sold or shared with private companies, corporations, researchers, insurers.
Used for predictive modelling of behaviour, health, or future needs.
Fed into AI systems for algorithmic profiling.
Under the Data Access Bill (2025), you do not have full ownership or control over how that data is used.
🧠 Why This Is Relevant for Neurodivergent Families
The WGS project aims to identify what thy term as ‘risk’ for neurodivergence – such as autism, ADHD, and learning disabilities. While early identification can be supportive when done ethically, this data also opens the door to:
Profiling children from birth based on cognitive, behavioural, or emotional traits.
Exclusion from services or education based on genetic flags.
Potential pressures on parents to pursue gene therapy or modification.
Future reproductive discrimination, where children are deemed “undesirable” based on their genome.
Neurodivergent traits are complex and polygenic – determined by many genes interacting with environment. Yet these nuances are rarely accounted for.
📜 Is There Informed Consent?
At present, there is no clear evidence that parents will receive a full copy of their child’s results – or understand what those results mean. In many pilot programs, parents are only told about a handful of “medically actionable” genes.
This means the government and associated bodies may know vastly more about your child than you do.
⚖️ What You Can Do Instead
1. Opt Out (If Available)
As of 2025, the program is being framed as optional – but opt-out pathways may be unclear or deliberately hidden. Ask specifically whether cord blood DNA will be sequenced and stored and formally request (in writing) for it be destroyed after screening if you do not consent to sharing.
2. Request Written Policy
Demand a copy of the policy outlining how your child’s data will be used, stored, who can access it, and for how long.
3. Use Private, Independent Testing (If needed).
Consider using a private genetic service that:
Allows full data download.
Does not sell or share data.
Focuses on functional interpretation, especially for health and neurodiversity Companies like Genomelink, SelfDecode, and StrateGene allow you to explore your own data without handing it to third parties – but check their privacy policies carefully.
4. Stay Informed About the Data Access Bill
This 2025 legislation reshapes data ownership and access. Under it:
Health data can be accessed by more third parties under broad categories.
Genomic data is not fully protected under standard patient privacy rules.
You may have limited right to deletion once data is submitted.
🧭 Blueprint
Your child’s DNA is not just medical information – it is a personal blueprint that reveals a lot more than many people realise. With AI now accelerating the analysis of genome data, predictive profiling is no longer theoretical – it’s here.
While genetic insights can empower individuals, true informed consent and control must come first.
We support education, access, and autonomy – not silent extraction, profiling, and commodification.
Reference:
🔐 Why This Is So Alarming in Context of NHS WGS
1. DNA is a permanent data ID
Your genome is immutable – it uniquely identifies you, your family, and your offspring.
Once sequenced and stored, it is:
Irrevocable – can’t be “changed like a password”.
Traceable across systems and databases.
Interpretable over time as genomic science advances.
2. It can be used for predictive behavioural profiling
Already possible:
Personality tendencies (e.g., aggression, addiction, empathy).
Intelligence, memory, attention.
Psychiatric vulnerability.
Mitochondrial capacity (fatigue, fertility).
Drug response (pharmacogenomics).
They say this is “for care planning.” But that level of forecasting creates the infrastructure for algorithmic prejudice – denying autonomy before a child has even lived.
3. DNA-as-storage could mean physical embedding of external data
The concern:
If synthetic DNA can store movies, malware, or entire operating systems – what stops the embedding of metadata, legal tags, or encrypted files into someone’s sequenced genome?
Could your own DNA carry things you didn’t put there? Could it be used in quantum bio-surveillance, tracing, or smart-ID convergence?
⚠️ Why Cord Blood Collection Matters More Than People Think
Cord blood contains not just the baby’s pure stem cells and genomic blueprint, but also traces of the maternal line (mitochondrial and epigenetic environment).
Dual harvesting potential: baby + mother in one sample.
Stored in biobank conditions perfect for DNA data longevity.
Under the Data Protection Act, biological material isn’t always treated the same as digital records. It creates legal gray zones.
🧭 What This Means
You now have a direct bridge between:
The technological reality of DNA as a data platform.
The ethical and geopolitical risks of mass neonatal sequencing.
The hidden infrastructure being laid under the guise of healthcare.
> If your DNA is sequenced, catalogued, and stored in a centralized database, then you are the digital ID.
There’s no need to ask for your consent to a biometric ID or digital wallet if they already possess the most unique, permanent, and trackable identifier you have – your genome.
🔍 Why DNA = the Ultimate Digital ID
1. It’s Immutable
Unlike a passport or device ID, your DNA can’t be changed. It persists throughout your life and into your descendants.
2. It’s Universally Unique
Even identical twins diverge epigenetically, so your DNA fingerprint can confirm identity more precisely than any other method.
3. It’s Informationally Dense
DNA holds:
Your sex, ancestry, risk scores, mental health profile.
Fertility, disease likelihood, aggression, addiction, learning ability.
Even voice tone, facial features, and likely emotional reactivity.
4. It’s Inherently Interconnected
By sequencing you, they also map your family, lineage, and social connections. It forms a biological web of traceability.
5. It’s Already Being Used in Surveillance and Criminal Databases
UK Forensic DNA database is one of the largest in the world.
Familial DNA matching can track individuals even if they themselves haven’t submitted a sample.
New tools now allow “phenotypic rendering” – predicting facial structure, eye colour, and more.
📡 Add AI + LLMs and You Get…
Instant analysis of thousands of genomes
Behavioural prediction models.
Risk scoring at birth (or even pre-conception).
Social engineering via biology.
Integration with insurance, education, employment decisions.
Under the Data and Digital Information Act 2025, this can be shared between “authorized agencies,” including commercial, law enforcement, and health data platforms.
🧬 Bottom Line
> Genomic identity is the new digital passport.
You don’t opt into the system – you are the system once sequenced- and unless a parent explicitly opts out, it starts at birth.
Please share so parents can have informed consent on the reality of this. 🙏