“Your chromosomes are made of DNA, which can tell you a lot about you. Explore your 23 pairs today. Find out what your DNA says about you and your family.”
Intriguing? Curious? Exciting?
You are not alone in thinking so.
About a million people came forward to lend their genomic data to the same company to find out more about their health and history. However, in late 2013, the Food and Drug Administration (FDA) ordered the company to stop selling its personalized genomic kit. Why? For violation of federal marketing guidelines. The kit was not FDA-approved and the company had to shift its focus onto re-vamping its product line.
A New Debate – Who Should Own Your DNA?
Source: Amazon UK
The company’s rise and fall, however, brought to the forefront a debate that has still not found any conclusive answer – Should we have exclusive rights over our DNA or should it be allowed to be sold to third parties without our consent?
Let’s get a perspective on what DNA ‘selling’ means. In 2015, 23andMe announced two multimillion-dollar partnerships with two big pharma companies: a 3,000-person whole-genome sequencing project with Genentech to discover new drugs for Parkinson’s Disease, and a partnership with Pfizer that grants the company extensive access to 23andMe’s data. More such partnerships are underway. This means that pharma companies can freely access information about the DNA of people who have taken the saliva test through 23andMe.
Although the company has time and again promised to maintain the anonymity of its users and only use them for research purposes, the reliability of such a promise needs to be verified. A genetic map is basically a digitized version of a human being. Undoubtedly, samples of cells and specifically, DNA, have provided scientists with the opportunity of extensive research which has led to the discovery of a ton of medicines and knowledge about the human body.
No one is questioning the need for such research; the point is whether the consent of the individual, whose cells are being used and replicated millions of times, is essential or not. Just like the house or car we bought is exclusively ours by right, isn’t our body and its parts equally our own? If someone is using our house, we would surely expect rent. Why not a payment then if our cells are being used?
Tricky Aspect of DNA & Law
DNA studies have not only advanced medical knowledge but also our ideas about evolution and human migration. It is today possible to know who our distant relatives were and where our family line originated. Another field where genetic maps have yielded miraculous results is DNA forensics in criminal investigations. Police have accessed DNA information of several individuals to solve cases.
Source: ABC News
Let’s take the example of the Golden State Killer case in California. Joseph James DeAngelo Jr. committed multiple murders, rapes and burglaries across California between 1973 and 1986. The case was finally cracked decades later by comparing crime scene DNA to genetic information on commercial genealogy websites that people use to explore their ancestry. The process led to a relative of the killer, which in turn, led to the criminal.
In August 2020, he was finally sentenced to life imprisonment without the possibility of parole. This case led to the establishment of an extensive genetic database of criminals in California and has been quite useful to the police department. However, the relative whose sample led to DeAngelo’s arrest was never informed about how his saliva was being used. Should he not have been told?
How Countries Treat DNA around the World?
The Council of Europe created a treaty in 1990 to protect individuals against such practices stating that a biological sample taken from a patient “may be stored and used for a purpose other than that for which it was removed, only if this is done in conformity with appropriate information and consent procedure.” This includes samples like tissues, organs, and blood, but not of hair, nails, or skin.
Similarly, the American Medical Association requires physicians to disclose applications of the sample to the patient and suggests they share profits from commercialization. The problem is that his requirement isn’t enforced by any law and so is more of a suggested guideline.
Source: Genomics England
In the UK, Genomics England, established by the government’s Department of Health and Social Care, has been tasked with the ‘100,000 Genomes Project’, which aims to sequence genomes from patients with a rare disease and their families, as well as patients with cancer. All the patients are with the NHS public health service and the focus is on improving treatment rather than developing profitable new drugs.
This seems to be a more ethical practice where patients are not only aware of what is being done with their samples, and they are also not being duped off large sums of money. Companies like 23andMe and other health-screening services make millions out of selling customers’ DNA data to third-parties without a penny being shared with the owner of that DNA. The courts also seem to be of the opinion that our cells are not really our property and it is okay to be collected in databases.
Apart from being deprived of monetary benefit, the other fatal flaw with DNA storage is the easy profiling of people. While consent might be taken for medical research, what is the guarantee that it will not be used for other purposes? What if insurance companies had unrestrained access to such data? Could they not target specific consumers with certain diseases and charge them more for insurance against it? It is also possible to do racial and community profiling through one’s DNA. Would it be very safe then in the hands of a terrorist aiming to target people of a specific community? He could simply access the websites and find out who in his neighborhood (or anywhere in the world for that matter) is of a different faith!
DNA sequencing has yielded multiple benefits in the past – from reuniting families to informing people about their ancestry to cracking criminal cases. But as we have seen with many portals, what starts with benevolent intentions can easily be misused by malevolent minds. Data privacy is our right. If companies like Facebook and Amazon are being challenged and criticized for over-surveillance, then it is time we question DNA data collecting agencies, whether government or private and compel them to ascertain complete protection of our personal data. Our DNA cannot be and should not be up for sale!