Can people be protected from theft of their genetic information?

A few days before the start of the war in Ukraine, French President Emmanuel Macron refused to take a coronavirus test and sat at a distance from Russian President Vladimir Putin. Similarly, German Chancellor Olaf Schultz refused to test in Russia, but the fact is that people leave behind their DNA everywhere from strands of hair, nails, dead skin, saliva, etc., while genetic analysis can not only provide current and future health information does not reveal, but the identity of people and their ancestors. Their physical characteristics, the level of their intelligence and the possible characteristics of their children, and with the continued development of these genetic technologies, there are increasing fears of the use of secretly stolen genetic material for criminal purposes, or for genetic reproduction and reproduction in the laboratory. Are there laws needed to protect people from these thefts?

“Madonna’s Bells”

Stories of genetic information theft or extreme precautions taken to avoid it regularly grab the headlines when it comes to top politicians, as with both Macron and Schultz, and while these concerns may seem relatively new, pop star Madonna has been ringing alarm bells. the possibility of collecting and testing DNA in secret for more than a decade, as she hired private cleaning crews to disinfect her dressing room after her concerts, and ordered her new toilet seats at each stop of her tours.

At first, Madonna was ridiculed and the media echoed that she became obsessed and paranoid about having her DNA stolen, but as genetic engineering techniques advance faster and at a cheaper cost to the consumer world, these fears seem not only reasonable, but justified, especially since Celebrities, politicians and other public figures are obvious targets for crypto-genetic testing, with their public attitudes and reputation likely to be affected by genetic detection.

Your genetic information is everywhere

This is because people leave their genetic information on discarded tissues of skin, fingernails, strands of hair, on the edge of cups of coffee or waste water, and smoke cigarettes everywhere they go, often without a problem, but problems arise when one or more people are curious about them. Bad faith or organized crime groups interested in recovering relics of daily life that secretly contain genetic information, and have the ability to gather this evidence, whether the victims are celebrities or ordinary people who have secrets they want to keep .

In this case, if any of these people wanted to collect and analyze someone else’s DNA without their consent, they could do so, after it became easy to commit DNA theft by sending skin tissue, hair or saliva to a company on the Internet secretly testing for DNA, at prices of about $200 or $300, and then waiting for the results of genetic analysis to arrive by e-mail.

There is no crime without the law

What may encourage people with bad intentions or organized crime groups to do this is that most countries of the world and most of the US states do not consider DNA theft a crime from a legal point of view, and in many cases , the collection and analysis of someone else’s DNA is still, in most cases, a process unrestricted by law. , which helps criminals escape punishment on the basis that there is no crime without the law.

The danger here is that genetic analysis not only reveals personal information such as current health conditions or risks of certain genetic diseases such as heart and cancer, but also reveals basic aspects of people’s identity, such as their ancestors and possible traits for their future children, therefore warns genetic information experts that Nothing is more private than the genetic code, especially as genetic technologies continue to develop, and concerns grow about the use of surreptitiously collected genetic material for in vitro breeding.

And despite the popularity of genetic analysis to either identify origins, or to find relatives, or to know family origins, or to diagnose a disease, or to determine an appropriate diet or physical activity, especially to the low cost of reading DNA sequences, and some people are obsessed with comparing their own genomes. With the genomes of famous personalities such as Napoleon Bonaparte or Tutankhamun, for example, the collection of genetic information without the consent of the person or family various risks.

The dangers of secret exams

Secret genetic testing can be a problem for ordinary people. For example, there are online services that offer to isolate DNA from personal items (such as sheets and clothes) to detect infidelity, and other services such as analyzing the paternity of a child from a child’s biological swabs, Other examples of clandestine genetic testing can include sending genetic material from an associate or acquaintance to a genetic testing company to gather information about that person so that it can be used against them in a variety of ways. their core risk for analysis, and use their personal information about potential disease risks to make employment decisions.

In various political battles, political candidates can steal DNA and then blackmail opponents to drop out of the election race or to pressure political opponents to implement specific demands. Marriage applicants can steal the DNA of their potential partners to determine whether the man or woman is favorable to a genetic profile he or she deems inappropriate or poses an alleged danger to future children.

Ethical and legal problem

Regardless of the intended or actual use of a confidential genetic analysis test conducted without the knowledge of its owner, it presents an ethical and legal problem in the previously mentioned cases when the potential for harm arises and creates potentially harmful consequences for the test, because obtaining samples and obtaining information resulting from the sample test threatens privacy An article published a few years ago in “Science” showed that even in the absence of other identifiers such as a person s name, it is possible that sequencing the entire genome of an individual can lead to identification alone, by matching its dataset with publicly available data on databases. As science advances, the amount and type of personal information that can be obtained from a single sample tested will likely continue to expand, and thus the opportunities for privacy violations will increase.

However, there are few laws protecting individuals’ interests in genetic material and information, say Lisa Wirtinsky, a law professor at the University of Maryland, and Yaniv Heald, a law professor at Georgia State University, and they believe the growing public interest in genetics technology has increased. It is possible that gene thieves as well as DNA collecting groups will soon become almost ubiquitous.

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Weak legal frameworks

While US courts have been able to avoid dealing with the legal complexities of stealth DNA collection, they will not be able to do so for much longer, as they will have to deal directly with genetic theft from public figures or others through existing legal frameworks that relate. to genetics that vary From state to state, but often poorly, judges will face fundamental questions about how genes relate to personhood, identity, property, health, disease, intellectual property and reproductive rights.

Further complicating the United States is that modern American privacy law is a complex web of state and federal regulations governing how information is acquired, accessed, stored, and used, and the right to privacy is limited by the Constitution’s First Amendment protections for freedom of expression and the press. In addition to the Fourth Amendment’s prohibition on searches and seizures, public figures face additional limitations on their privacy rights because they are targets of the legitimate public interest, even though they enjoy publicity rights that value the commercial value of their unique personality traits.

Mixed complications

Under current laws and the current state of genetic technology, most people do not need to worry about secret collections of genetic material, since genetic code thieves primarily target public figures.

Because legal experts rule out that the US Supreme Court will recognize new rights, or even affirm previously recognized rights, that are not expressly mentioned in the Constitution, legal protections for individuals subjected to genetic theft are unlikely to adapt at the federal level by temporal and technological change This means that issues related to genetics and genetics will fall within the jurisdiction of the legislatures and courts of each US state.

But none of the states have adequately addressed the complexity of genetic legal claims. In states that have laws designed to protect genetic privacy, regulations cover only a narrow range of genetics. For example, some laws may prohibit the disclosure of genetic information, but do not. Ban their collection.

Surprising case

A case in New York State provides a striking example. While the state prohibits unauthorized genetic testing, a strange case of covert testing has occurred. An artist collected discarded cigarette butts and chewing gum from the streets of New York and sent them for analysis, using genetic information related to facial structure, hair and eye color, and features. Another was to create images of people who were of these disposed of cigarettes and chewing gum and displayed them in an exhibit in New York, which some considered a serious invasion of privacy, but this activity was not prohibited in the state due to the narrow definition of the law under which the artist was not technically involved in revealing genetic tests. For health information, the law did not prohibit tests that revealed the physical characteristics used by the artist in the photographs. he displayed in the gallery.

What should the law cover?

For this reason, law professors advise that the law should provide a clear definition of the type of test or analysis it deals with, and should not be vague or narrow in order to achieve an adequate level of protection. Secret genetic analyzes that claim to be related to paternity and asymptomatic disease tendencies should be specifically prohibited Symptomatic hereditary diseases, family trees and other analyzes likely to yield information that may now or in the future be known to a person without the knowledge and consent of the person being tested.

It is also important that states or states do not limit the protection of secret tests to contexts in which people are likely to be harmed by the unauthorized use of their samples or genetic information, but rather that all unauthorized uses and analyzes of samples and the disclosure of information of those samples must be limited.

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