The relatively simple tests of analyzing the DNA of individuals have proven effective in the fields of medicine and criminal justice, as well as genealogy. They can spot genetic disorders, convict or acquit criminal suspects, and help people find out their family tree. But in recent years, it has been shown that DNA data can be used in ways we never expected or wished for. As a result, more people are beginning to worry about what might happen to their most private personal information, says Bloomberg.
Facts you may not have known about DNA
It's hard enough trying to figure out how your DNA data might be used now, let alone in the future. And unlike your bank account number or your password that can be changed, once someone knows your DNA data, you will not find a way to change it. There are obvious reasons for companies like insurance companies to care about your body composition.
The US Army advised its personnel in 2020 not to take consumer tests, in part because a result showing signs of a specific disease may not be accurate and could be career-disrupting. And your genetic data may reveal information you don't want people to know, such as unrecognized parental ties. And if you're a lawbreaker, or related - even if distantly - to one, there's the fact that law enforcement agencies are increasingly relying on DNA to solve tough cases. These tests also reveal your ethnic or racial group, which can be dangerous in some contexts.
In China, the government took DNA samples from citizens under the guise of free medical checks, then created a genetic database with the profiles of about 100 million people, according to the quasi-governm
ental think tank Australian Strategic Policy Institute. The institute said that the data was collected from almost all citizens in Xinjiang Province, where China claims to be fighting “radicalization” among the Muslim Uyghur ethnic group, but in reality it persecutes it, as proven by numerous reports. Nearly a million Uyghurs have been held in concentration camps, according to the United Nations. When Hong Kong officials offered coronavirus tests to the city's entire population in September, concerns were raised about collecting DNA data from samples, but authorities denied this.
Who else can access my DNA data?
In the European Union, your data may be shared in some cases without your consent, for the purposes of scientific research that are in the public interest, provided that the data is anonymous, that is, devoid of information such as your name and contact details.
In the United States, results of tests conducted in a medical setting can be shared if they are anonymous.
Commercial DNA testing companies in the United States are first bound by their terms of service. Generally, these companies share individuals' data with the contractors they help process, and with pharmaceutical company researchers and academics if you give them additional consent. These companies often share aggregated data as well.
How do governments use DNA data?
Seventy countries reported that they maintain national DNA databases, which assist in the identification and conviction or acquittal of criminal suspects. And in recent years, US police have pushed the limits of their own databases, solving crimes based on the results of consumers' DNA tests. They would take DNA samples from crime scenes and compare them with the DNA of people in commercial databases, to identify the suspect among the next of kin.
Most commercial testing companies say they require a warrant to allow the police to use customer data. But in 2019, a Florida judge issued a warrant allowing police access to the entire database of GEDmatch, a free service that allows genealogists to download their data from other companies so they can find more relatives.
Doesn't anonymous data protect my identity?
Not necessarily, because your DNA is inherently your identity, it is a unique code that belongs only to you. It does not have to be stored with your name in order for it to be associated with you. Research has shown that it is possible to discover the identity of anonymous people who participated in genetic research, for example by checking their dates of birth, gender and postal code on publicly available databases.
Databases are also generally easy to hack. Testing company Veritas was hacked in 2019, exposing customer information, but the company said genetic data was kept safe.
How can I keep my DNA data confidential?
Maybe it's too late. There are many people whose DNA is almost identical to yours. So if you have a third cousin you've never heard of, but who decides to share their DNA with the world, your data must have spread too. A study indicated that only 2% of people need to share their genetic information in order for it to be easy to identify almost all humans. With little hope of keeping our genetic information secret, experts have begun to call for more regulations to ensure that this data is not misused.
Can my data be used to discriminate against me?
There are some legal restrictions here. In the United States, a 2008 law called the Genetic Information Non-Discrimination Act aims to protect against discrimination by employers and some insurance companies based on genetic data.
But loopholes in the law mean that life, disability and long-term health insurance providers can legally require you to share your DNA data. They can also make decisions based on that data, although there is no evidence that this happens.
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