Personal genetic testing kits are big business; individuals may find out their heritage and health concerns for about $99 to a few hundred dollars. Do you need to be afraid? Some people worry that they won’t know what to do with the knowledge they learn about their DNA after DNA testing, which may include disturbing things like the chances of getting certain diseases.
Professional and scientific skeptics argue that the information could not be as accurate as promised and could influence people’s choices about their health. However, there is a significant danger that customers aren’t paying as much attention to privacy. Nothing is more private than your genetic information, yet mailing abroad for a personal genome kit entails giving the DNA testing clinics access to your DNA. Beyond providing clients with genetic and health assessments, what more do they do with it?
Your genetic information is specifically yours, which is its fundamental feature. Her research on the subject and interviews with people show a lack of consumer knowledge.
Here are the top five privacy issues for customers who provide their DNA to test businesses.
Hacking
The genetic testing company is not the only one at risk but possesses a particular data collection about its customers. Additionally, the area just had a hack. According to the corporation, DNA data, in particular, was not compromised. However, a hack in this area is still a worry.
According to a business representative, Ancestry’s first objective is to protect consumer data.
Who may Make Money from your DNA? The Solution: Not you
The fact that most customers consent to letting these businesses share DNA with research partners is one of the most convincing evidence that customers have a favorable opinion of these businesses. These businesses state that they will not share your DNA with any other parties unless you provide explicit approval. However, according to statistics from 23andMe, a large majority of customers do so – at 23andMe, more than 80%.
Customers can opt into research on behalf of scholarly, charitable, and commercial groups through 23andMe. Additionally, they provide the choice to independently agree to studies on particular diseases using their DNA in collaboration with commercial pharma firms, such as lupus and IBD studies done with Pfizer and the Parkinson’s illness study done with Genentech.
According to Veritas Genetics CEO Mirza Cifric, customers may benefit from scientific findings by updating their genomes or reading publications that advance science. Although we see potential benefit in that, Cifric added, “our major focus is revealing secrets that lie in the genome, not engaging pharmaceutical firms to produce medications.”
Experts Claim that Laws Protecting Genetic Privacy do not Go Far Enough.
Many privacy experts worry that it is overly restricted because it only prohibits employers or insurance providers from obtaining this data.
However, several of these programs, like the Office of Personnel Management, which is in charge of FEHB, and the TRICARE insurance program run by the U.S. Military, have internal standards that forbid or limit genetic discrimination.
Consumers are taking these firms at their word when they say that preserving customers’ privacy is their top concern since the genetic information field is, in many ways, still an unknown legal area. Customers are reminded by Ancestry that “your data belongs to you and will always be your property” and “you may request that we erase your data or account at any time.”
Law Enforcement is Aware that These Businesses Own your DNA and could Demand it.
Law enforcement and courts may already request your data, and these requests may be made in response to subpoenas.
Do you recall the case of the Golden State Killer, which was just recently solved after decades? Using DNA from a genealogy firm, it was cracked. The capacity of law enforcement to target your DNA through these testing corporations is a significant problem, even while catching a murderer is a positive thing.
The U.S. Military or the State Department, among other governmental agencies, may also make requests. There is a considerably higher likelihood that the federal government will need this DNA information for law enforcement than to take advantage of any employer-employee GINA gap.
In their privacy policies, each of these DNA testing clinics explains this, and 23andMe makes it clear that it supports customers. It declares that it will “resist” police attempts.
On all current inquiries from the government and law enforcement, 23andMe produces a transparency report.
The Business’s Circumstances or Privacy Statement may Alter.
Unintended consequences are dangerous with this business strategy, not simply severe instances like hacking.
Privacy statements are subject to the present regulatory landscape in the ICT sector.
There are no restrictions on what these businesses may do; they need to express it in their privacy policies of DNA testing, which they are free to modify whenever they want (though you might need to re-consent). Most people we spoke with were unaware of the hazards and had a relatively positive opinion of how these businesses will treat them in the future.
