Dna Testing Companies Increase Lobbying Equally Privacy Concerns Mount

From Sludge, August 28:

The increment inwards lobbying comes months after the arrest of the suspected Golden State Killer past times using familial deoxyribonucleic acid information from a genealogy enquiry site. 

It’s a scene from a dystopian novel: You’re curious most your ancestry then y'all buy a genealogy kit online as well as submit a sample of your saliva to discovery out whether your grandmother was correct most your menage unit of measurement origins. Influenza A virus subtype H5N1 few weeks afterwards y'all acquire your results. It makes for skillful provender for the side past times side menage unit of measurement dinner. In telephone commutation for quelling your curiosity, the fellowship at 1 time has your DNA—the molecular composition that makes you, you. And unless y'all read the fine print, y'all probable convey no thought that this information most what makes y'all unique is beingness sold to third-parties for medical enquiry as well as who knows what else.

As the popularity of genetic as well as genealogy testing companies, such equally Ancestry.com as well as 23andMe, skyrockets, as well as privacy concerns mountain over how user information is secured, the companies are increasing their presence inwards Washington.

Ancestry.com, the largest for-profit genealogy company, hired a firm to entrance hall Congress as well as federal agencies on their behalf inwards January, after spending exclusively $10,000 inwards 2017 on lobbying efforts. So far this year, the Utah-based fellowship has increased their lobbying spending eightfold, spending $80,000 on a theatre to entrance hall on “genetic privacy issues,” according to their Senate disclosure reports reviewed past times Sludge.

Helix, some other deoxyribonucleic acid testing site, too hired a lobbying theatre for the foremost fourth dimension inwards 2018, spending $40,000 then far this yr to entrance hall on “genomic health, information privacy as well as security, as well as rule of laboratory developed tests,” their lobbying disclosures states.

Golden State Killer Case Raises Privacy Concerns

The increment inwards lobbying comes months after the Sacramento County Sheriff’s Department arrested the suspected Golden State Killer—who killed at to the lowest degree a dozen people as well as committed to a greater extent than than l rapes during a 12-year spree start inwards 1974—by using information from a genealogy enquiry site. 

More than 4 decades since the investigation began, law arrested 72-year one-time Joseph James DeAngelo inwards Apr after criminal offence scene deoxyribonucleic acid was a partial represent to deoxyribonucleic acid on GEDmatch, a geneology site. While DeAngelo’s genetic profile was non inwards the GEDMatch database, a distant relative’s was, narrowing downward the suspected puddle of possible series killers to 1 family.

While law enforcement’s ingenious purpose of genealogy sites may convey captured 1 of the most elusive series killers, it surfaced questions most how genetic information is stored as well as who has access to users’ genetic data.

Unlike patients inwards clinical trials or inwards medical settings, in that place are no HIPAA-like regulations to protect consumers’ private wellness information on genetic as well as geneology testing websites. That way that users’ wellness information tin live on used or sold to 3rd parties for medical enquiry or to target for sure individuals.

In June, Fast Company foremost reported that deoxyribonucleic acid testing companies, similar 23andMe as well as Ancestry.com, were beingness investigated past times the Federal Trade Commission over their policies for treatment personal information as well as genetic data, equally good equally how that information was shared alongside 3rd political party vendors. 

Influenza A virus subtype H5N1 spokeswoman for the FTC declined to comment to Sludge, noting that the agency could non enjoin whether it was investigating a fellowship or not.

The information safety number was farther bolstered after an Israeli-based genetic testing fellowship learned of a safety breach affecting 92 1000000 people. In June, MyHeritage announced that it was victim to a security “breach” exposing e-mail addresses as well as hashed passwords of roughly 92 1000000 users. deoxyribonucleic acid information as well as menage unit of measurement tree information were stored separately, the fellowship said inwards a controversy at the time....

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