‘What You Risk Reveals What You Value’
Dailycsr.com – 13 February 2019 – The business of genetic testing is a booming one, as the global value of the market is going to surpass “$10 billion” by the year of 2022, finds a study conducted by “Grand View Research”.
However, amid the growing popularity of DNA testing, we often miss out on the key concern of privacy. In fact, the DNA testing firms have agreed that in some cases the data thus collected is with “shared with or sold to third parties” for research use. Likewise, last year in July, 23andMe and GlaxoSmithKline announced their partnership venture using the former’s “5 million customers’ DNA results for researching on new drug.
Peter Pitts is an ex-commissioner of the “Food and Drug Administration”, who is currently serving at the “Center for Medicine in the Public Interest Forensic Genetics Policy Initiative” as president. With the dicey “ethical questions” on the card, the afore mentioned initiative is scrutinising the “implications of data privacy around DNA testing” on a greater scale. In Pitts’ words:
“The industry’s rapid growth rests on a dangerous delusion that genetic data is kept private. Most people assume this sensitive information simply sits in a secure database, protected from hacks and misuse. Far from it. Genetic-testing companies cannot guarantee privacy. And many are actively selling user data to outside parties.”
The “popularity of these kits” lies due to their budget friendly cost, as it enables people to know about their ancestry besides uncovering “potentially dangerous genetic mutations” only for “less than $100”. However, Pitts sees that applications of these results beyond the range of “customer curiosity” could create problem.
Pitts also said:
“There is almost a complete lack of awareness among the public about this issue. The DNA kits are being viewed as stocking stuffers or cocktail party conversation. People don’t think about the security of their DNA as they don’t realize its value. You can change your Social Security number or your computer password, but you can’t change your DNA. I’m not saying DNA testing doesn’t have value, but people don’t understand the privacy and security implications.”
The first one on the list as per Pitts is the “misuse of data”, whereby he explained:
“Imagine a political campaign exposing a rival’s elevated risk of Alzheimer’s. Or an employer refusing to hire someone because autism runs in her family. Imagine a world where people can have their genomic building blocks held against them. Such abuses represent a profound violation of privacy. That’s an inherent risk in current genetic-testing practices.”
Furthermore, Pitts noted that the Portability Act came into existence when DNA testing was “a distant dream on the horizon of personalized medicine. But today, that loophole has proven to be a cash cow.”
Secondly, there is a fear of data going into wrong hands, as he stated:
“Customers are wrong to think their information is safely locked away. It’s not; it’s getting sold far and wide”.
“Hacks are inevitable. Easily accessible, public genetic depositories are obvious targets.”
In case, genetic data goes into wrong hands, “it’s relatively easy for them to de-anonymize it”, warned Pitts. “New lab techniques can unearth genetic markers tied to specific, physical traits, such as eye or hair color. Sleuths can then cross-reference those traits against publicly-available demographic data to identify the donors.”
“Lost in the fine print” is yet another concern besides regulators entering the fray, as Chuck Schumer, the “Senate Democratic leader” of New York, said last December:
“I think if most people knew that this information could be sold to third parties, they would think twice. The last gift any of us want to give away this holiday season is our most personal and sensitive information.”
Therefore, trust and transparency are the two pillars to support the technology, as Pitts added
“Honest, robust self-awareness is better than regulation”.
“These companies have to ramp up their awareness about government relations and overall be better partners in the genetic testing system. There should be responsible parties on all sides of this conversation.”
References:
3blmedia.com
However, amid the growing popularity of DNA testing, we often miss out on the key concern of privacy. In fact, the DNA testing firms have agreed that in some cases the data thus collected is with “shared with or sold to third parties” for research use. Likewise, last year in July, 23andMe and GlaxoSmithKline announced their partnership venture using the former’s “5 million customers’ DNA results for researching on new drug.
Peter Pitts is an ex-commissioner of the “Food and Drug Administration”, who is currently serving at the “Center for Medicine in the Public Interest Forensic Genetics Policy Initiative” as president. With the dicey “ethical questions” on the card, the afore mentioned initiative is scrutinising the “implications of data privacy around DNA testing” on a greater scale. In Pitts’ words:
“The industry’s rapid growth rests on a dangerous delusion that genetic data is kept private. Most people assume this sensitive information simply sits in a secure database, protected from hacks and misuse. Far from it. Genetic-testing companies cannot guarantee privacy. And many are actively selling user data to outside parties.”
The “popularity of these kits” lies due to their budget friendly cost, as it enables people to know about their ancestry besides uncovering “potentially dangerous genetic mutations” only for “less than $100”. However, Pitts sees that applications of these results beyond the range of “customer curiosity” could create problem.
Pitts also said:
“There is almost a complete lack of awareness among the public about this issue. The DNA kits are being viewed as stocking stuffers or cocktail party conversation. People don’t think about the security of their DNA as they don’t realize its value. You can change your Social Security number or your computer password, but you can’t change your DNA. I’m not saying DNA testing doesn’t have value, but people don’t understand the privacy and security implications.”
The first one on the list as per Pitts is the “misuse of data”, whereby he explained:
“Imagine a political campaign exposing a rival’s elevated risk of Alzheimer’s. Or an employer refusing to hire someone because autism runs in her family. Imagine a world where people can have their genomic building blocks held against them. Such abuses represent a profound violation of privacy. That’s an inherent risk in current genetic-testing practices.”
Furthermore, Pitts noted that the Portability Act came into existence when DNA testing was “a distant dream on the horizon of personalized medicine. But today, that loophole has proven to be a cash cow.”
Secondly, there is a fear of data going into wrong hands, as he stated:
“Customers are wrong to think their information is safely locked away. It’s not; it’s getting sold far and wide”.
“Hacks are inevitable. Easily accessible, public genetic depositories are obvious targets.”
In case, genetic data goes into wrong hands, “it’s relatively easy for them to de-anonymize it”, warned Pitts. “New lab techniques can unearth genetic markers tied to specific, physical traits, such as eye or hair color. Sleuths can then cross-reference those traits against publicly-available demographic data to identify the donors.”
“Lost in the fine print” is yet another concern besides regulators entering the fray, as Chuck Schumer, the “Senate Democratic leader” of New York, said last December:
“I think if most people knew that this information could be sold to third parties, they would think twice. The last gift any of us want to give away this holiday season is our most personal and sensitive information.”
Therefore, trust and transparency are the two pillars to support the technology, as Pitts added
“Honest, robust self-awareness is better than regulation”.
“These companies have to ramp up their awareness about government relations and overall be better partners in the genetic testing system. There should be responsible parties on all sides of this conversation.”
References:
3blmedia.com
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