9th June 2026
This is one of the biggest ethical and privacy questions that has emerged over the last decade, and one that is only going to become more important as medicine and artificial intelligence advance.
The answer is not simply "yes" or "no." There are genuine benefits to sharing DNA data, but there are also risks that many people did not fully appreciate when they sent off a saliva sample to a commercial company.
Why companies want your DNA
Your DNA is one of the most valuable types of personal information that exists.
Unlike a password:
it cannot be changed;
it identifies not only you but also your relatives;
it contains clues about your health, ancestry and biological traits.
When millions of people's DNA is combined, it becomes an extremely valuable research resource.
Pharmaceutical companies may pay millions of pounds to access large anonymised genetic databases to help identify genes linked to diseases and develop new drugs.
The benefits
There are genuine public benefits.
Better medicines
Researchers have already used large DNA databases to identify genes involved in diseases such as:
Alzheimer's disease
Parkinson's disease
breast cancer
diabetes
heart disease
This has accelerated the development of targeted treatments.
Earlier diagnosis
DNA testing can identify people who have a higher genetic risk of certain illnesses.
Doctors may then recommend:
earlier screening
lifestyle changes
preventive treatment
before symptoms appear.
Solving family mysteries
Many people discover:
unknown relatives
adopted family members
missing parents
previously unknown ethnic origins
through DNA testing.
Crime solving
Police have solved decades-old murder and rape cases by matching crime scene DNA to relatives who had voluntarily uploaded their DNA to genealogy databases.
Many dangerous criminals have been identified this way.
The risks
This is where the debate becomes much more difficult.
You cannot change your DNA
If your credit card details are stolen, the bank issues a new card.
If your DNA is copied or leaked, there is no way to replace it.
It is permanent.
Your relatives are affected too
Your DNA is not just about you.
It also reveals information about:
your children
your brothers and sisters
your parents
your cousins
Someone else can indirectly reveal information about your genetic family without their consent.
Commercial profit
Many people believed they were simply buying an ancestry test.
In reality, some companies have built enormously valuable databases that have been used in commercial partnerships with pharmaceutical and biotechnology firms.
That raises an ethical question:
Should companies earn billions from information that individuals provided for a relatively small payment—or often with no payment at all?
Future uses
Perhaps the biggest concern is not how DNA is used today, but how it could be used in 20 or 30 years.
Future technology may reveal much more from DNA than is currently possible.
People who consent today cannot know what future scientific advances may uncover.
Could insurers or employers use it?
In the UK there are currently strong legal safeguards.
Insurers are generally prohibited from requiring predictive genetic test results, except in very limited circumstances involving very high-value life insurance policies.
Employers cannot normally demand DNA information.
However, laws can change over time, which worries privacy experts.
Can DNA really be anonymous?
Companies often say that DNA is anonymised.
The problem is that DNA is itself a unique identifier.
Researchers have shown that anonymous DNA datasets can sometimes be linked back to individuals by combining them with publicly available information.
As computing power and artificial intelligence improve, this challenge may become even greater.
Should companies profit from your DNA?
This is really a philosophical question.
There are two opposing views.
View 1: Yes
Companies invest billions in:
laboratories
scientists
computing systems
drug development
Without commercial investment, many medical discoveries might never happen.
Profit provides an incentive for innovation.
View 2: No
Individuals are providing the raw material.
Without millions of volunteers there would be no database.
Some argue people should:
receive royalties
be paid when their DNA contributes to profitable discoveries
retain ownership of their genetic information
This is similar to debates over ownership of personal data on social media platforms.
Should people delete their DNA?
That depends on why they submitted it.
You might consider deleting it if:
you only wanted ancestry information;
you no longer trust the company;
you are uncomfortable with future commercial uses;
you are concerned about data security.
On the other hand, some people choose to leave their DNA in databases because they hope it will contribute to medical research that could benefit future generations.
Should people volunteer their DNA today?
Compared with ten years ago, I think people should ask more questions before doing so.
For example:
Who owns my DNA once I submit it?
Can it be sold?
Can I delete both my DNA sample and digital data later?
What happens if the company is sold or goes bankrupt?
Will my information be shared with researchers?
Can I opt out of commercial partnerships?
Many people did not ask these questions when consumer DNA testing first became popular.
My view of where this debate is heading
I suspect we are moving towards a future in which genetic data is treated more like property than simply personal information.
Just as people increasingly expect rights over their financial and online data, there is likely to be growing pressure for individuals to retain meaningful control over their DNA. That could include stronger consent requirements, greater transparency about commercial use, and perhaps even mechanisms for people to share in the value created when their genetic information contributes to profitable discoveries.
The central question is simple but profound:
Your DNA is uniquely yours and cannot be replaced. If it helps generate life-saving medicines worth billions, who should benefit—the company, society, the individual who provided it, or some combination of all three?
That debate is only beginning, and it is likely to become one of the defining privacy and ethical issues of the coming decades.