What are the risks of data leakage when taking a DNA test? The Clare People – The Clare People

Ever wonder what could happen if your DNA data were leaked in a cyber attack and then sold to companies? Well, this is a question that anyone who has asked or is planning to do some kind of genetic test, like Ancestry, andMe and MyHeritage, you should ask yourself.

On some level, its like someone stealing your card details of credit, but potentially less disastrous. Its much less harmful to your life than if someone with bad intentions stole your credit card or your social security number, explains computer biology expert and University of Southern California researcher Michael Edge .

Leakage of the genetic code is as if credit card data were stolen (Image: Reproduction/Peggy und Marco Lachmann-Anke/Pixabay)

On the other hand, the advancement of scientific knowledge may bring greater problems for the user who had the genomic data leaked. Thats because theres a consensus in the scientific community that an individuals genome will reveal a lot about individuals in the future, Edge explains. The lucky is that this is not yet a reality.

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However, genetic information cannot be changed, which can easily be done with a credit card. Today, it is possible to discover the level of relatedness between different people through these data and this will be forever available in cases of leakage. In addition, this information can end up in public banks, specialized in DNA, around the world. In most cases, there are no risks in these scenarios, but sometimes the information can be used for other purposes, much less noble.

Therefore, users should be careful in accepting the privacy policy of companies that promise to read DNA tests. In this regard, a North American survey, carried out in 1024, found that 35 of 90 companies operating in this sector did not supply information on how they would handle biological samples or genetic data from their users. This is potentially worrisome.

In addition, companies tend to share this data with third-party companies on a standard basis, and even those that require consent to share data have wide discretion over sharing, as consent is usually given by the user

What laws exist to protect genetic data?

In the US and most of the world, there are still few federal laws governing the use of genetic information and most representatives politicians have no basis to technically discuss these DNA topics.

Among the available cases, the Genetic Information Nondiscrimination Act (GINA) prevents the genetic information of a US individual from being used to deny health insurance coverage and to discriminate against them in a work environment. In other words, having an increased risk for developing Alzheimers or any other hereditary condition cannot prevent a person from accessing health care. However, GINA does not cover life insurance, for example.

In addition, some state laws govern genetic privacy. For example, residents of the state of California have the right to receive information from these companies about the sharing of information obtained, including to whom the data is delivered. However, the initiatives are still small compared to the preciousness that the genetic code can deliver.

And in Brazil?

We have already mentioned it here at Canaltech what could happen if a persons genomic data fell into the wrong hands. We spoke with Leandro Netto, lawyer specializing in digital law at Lima Junior | Domene (LJD), who told us the following: The LGPD regulates any and all data that identifies or may make an individual identifiable. And DNA is one of the most accurate ways to identify someone. It is important to consider that the LGPD is not only regulates the storage, shipping, collection and other forms of use of DNA while classified as personal data. Furthermore, the LGPD expressly determines that DNA is classified as sensitive personal data, which imposes on companies that employ this information is more careful and also a greater duty of information to its holders.

As for the regulation by Anvisa, so far, we still dont have anything similar here. Anvisa regulates the activity of laboratories that carry out clinical analysis tests. But there is no express provision about their link to DNA tests. In another parallel, although the DNA test for biological link purposes is classified by the Federal Council of Medicine as a medical act, there is no sufficiently clear regulation for these exams. It is important to point out that there are bills addressing the subject, but, so far, any normative application would be carried out by analogy and in an incipient way, explains the lawyer.

Source: Live Science

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What are the risks of data leakage when taking a DNA test? The Clare People - The Clare People