We can find out about our ancestry or our risk of disease through our unique DNA – but do you know who has a right to access and use that information? The family history website Ancestry.com is selling a new DNA testing service called Ancestry DNA. But the DNA and genetic data that Ancestry.com collects may be used against “you or a genetic relative.” According to its privacy policies, Ancestry.com takes ownership of your DNA forever.
It seems obvious that no one has a greater claim to ownership over our DNA, tissues, organs or body parts than we ourselves do. But as our legal framework tries to catch up with technological advancements, it is becoming clear that the determination of ‘property rights’ is far murkier than expected.
Infringement of your natural rights
The recent film, The Immortal Life of Henrietta Lacks, tells the true story of an African-American woman whose cancer cells – code named HeLa – were taken without her knowledge in 1951. They were used to create a stem cell line, which had enormous clinical significance and commercial benefit in the decades since, but not for her or her family.
GP surgeries in England have recently been instructed to hand over patients’ entire medical records to a new data-sharing program with NHS Digital. There has been no public-awareness campaign surrounding this request, so many will be unaware that their medical records are to be shared and that patient data can be sold to third parties without anonymity.
A tissue sample may become the property of a research institute if it has acquired the sample lawfully, with consent, and work or skill has been applied to the sample. For example, biobanks are collections of samples like blood, saliva and tissue, along with health data obtained from consenting adults.
Law enforcement in many countries, including the UK and USA, has national DNA databases that contain genomic information of convicted offenders. Once a person is convicted or arrested for a crime, their DNA profile is collected and added to the relevant database. These genetic profiles are primarily used to help solve future crimes, as previous offenders have a higher probability of offending again once released from prison.
Familial DNA searching was first used to identify the person who murdered Gladys Godfrey in Nottinghamshire (UK) in 2003. Investigators had DNA samples obtained from the crime scene, but they were not able to find an exact match on the UK’s National DNA Database as the murderer had not previously been arrested.
The investigators decided to instead look for close matches who could be possible relatives of the murderer due to similarities in DNA profiles. The UK’s Forensic Intelligence Bureau was then able to identify a ‘top 20’ list of persons of interest by refining close matches using other parameters. This approach led to the identification, arrest and charging of Gladys’s killer. However, this approach used STRs, therefore there was a very limited number of markers
When a new case arises with some unknown DNA that has been collected from the scene of the crime, a DNA profile is generated and run through the database to search for a match. If there is no match, then the case is deemed unresolved, and the investigation comes to a halt.
Historically, only direct DNA comparisons (i.e., from the same person) or indirect DNA comparisons from close family members, such as siblings or parents (as would be used in a missing persons case, for example) were deemed to be good matches and could lead to an identification on a potential suspect.
These days it’s easier than ever to find out more about our family history by sending off saliva samples to companies who can trace our family tree. Some of us may also be happy to donate samples for medical research. But do we understand the relevance of information we are giving up about ourselves, and the implications of giving others access to our unique data? And could what’s known as a Dynamic Consent model help inform us better?
On 17 May 2017, Joel Winston, a consumer protection attorney and former deputy attorney general of New Jersey, published a blog post with the claim that the genealogy website Ancestry.com was “taking DNA ownership rights” from customers and their families:
The family history website Ancestry.com is selling a new DNA testing service called AncestryDNA. But the DNA and genetic data that Ancestry.com collects may be used against “you or a genetic relative.” According to its privacy policies, Ancestry.com takes ownership of your DNA forever. Your ownership of your DNA, on the other hand, is limited in years.
The article has caused widespread concern and prompted a public response from Ancestry.com’s Chief Privacy Officer Eric Heath, who called Winston’s post “inflammatory and inaccurate”. In response to our questions, Heath emphasized that Ancestry.com does not take ownership of your DNA; rather, you license it to them:
…The consumer maintains ownership of their data. This is actually why we need a license in order to conduct our analysis, display their results, and so on. Not only do they own their own data, but we allow them to download their raw data and they can ask us to destroy the data any time. A license is a contractual form of ownership. At its most basic, a license is defined as “a permit from an authority to own or use something.”
Ancestry.com does not have “exclusive ownership” because customers still retain ownership of their own DNA. Ancestry.com does not have “absolute ownership” because customers can revoke the license. But, Ancestry.com irrefutably takes ownership of customers’ genetic data by contractual license granted in the Terms and Conditions. A license is a contractual form of ownership. At its most basic, a license is defined as “a permit from an authority to own or use something.”
Ancestry.com does not have “exclusive ownership” because customers still retain ownership of their own DNA. Ancestry.com does not have “absolute ownership” because customers can revoke the license but beware of the small print. Ancestry.com irrefutably does takes ownership of customers’ genetic data by using your agreement in the contractual license granted by you to them in the Terms and Conditions. Beware of ‘Terms and Conditions’.
Beware of Terms and Conditions
By submitting DNA to AncestryDNA, you again grant AncestryDNA and the Ancestry Group Companies a perpetual, royalty-free, world-wide, transferable license to use your DNA, and any DNA you submit for any person from whom you obtained legal authorization as described in this Agreement, and to use, host, sublicense and distribute the resulting analysis to the extent and in the form or context we deem appropriate on or through any media or medium and with any technology or devices now known or hereafter developed or discovered.
Your DNA Your Decision
What happens with your genomic data is ultimately your decision. The sharing of genomic data can be used scientifically to save lives. When situations involving criminals are involved, should this control be taken from you to identify dangerous persons of interest and to protect the safety of others? That sounds plausible but it involves an invasion of your person as much if not more than the invasion of your home. Acourt order is required to enter or invade your home under such circumstances and at least the same safeguard should apply to the use of your DNA.