Consumer data is becoming a form of currency for most corporations. If it seems like every company is constantly trying to get you to share your data, it’s because they are. Data, especially when it’s connected to your specific demographic profile, is extremely valuable to companies to gain insights about a multitude of trends in order to target advertising and more. But what makes our personal genetic data so valuable? And why are we so willing to give it to genetic-testing companies?
Do we realize what personal rights we are forfeiting in the future when we eagerly dive into knowing about our past?
If data is so valuable, we should be protecting it the way we would protect our wallets, but often there is little care given to our personal data or meta-data. When genetic-testing companies exploded into the market, consumer response was huge. It felt like every one of our family members, friends, and co-workers were finding out more information about their genetic makeup and sending the kits out as gifts. All the hype and the benefit of having a deeper understanding of genetic history was enough for many people to jump on the trend without giving much thought to the risk.
“The key thing about your genetic data … it is uniquely yours. It identifies you, so if you are going to entrust it to a company, you should try to understand what the consequences are”Jennifer King, director of consumer privacy at Stanford Law School’s Center for Internet and Society
The risk of giving so much genetic data to these companies, whether they are helping you learn more about your allergens or genetic makeup, may outweigh the benefits. One of the biggest risks with data privacy is when third parties get involved and both Ancestry and 23andMe have been investigated by the Federal Trade Commission over their third party policies. Most of the third party sharing is able to be opted in or out, but many consumers choose to opt-in regardless of if they know what they are truly sharing.
Another large risk we take when using genetic- testing is the physical sample submission. With Nest or Alexa, often times we can delete our data and profile but how could our society regulate the destruction of our physical sample if we decide we no longer want companies to have it. The physical sample has also been something of major interest to law enforcement. This could definitely be viewed as a positive, considering the suspected Golden State Killer was identified due to a DNA partial match. This technology allowed a partial match to shrink the suspect pool from millions to one family tree.
But is law enforcement looking to these privatized genetic-testing companies a violation of our rights? Is the regulation of technologies quick enough to protect us?
Artificial Intelligence combined with the in-home healthcare testing industry could very well be the key to solving the global healthcare crisis, as discussed in previous articles at solvetheunsolveable, but data protection remains a key concern. Artificial Intelligence is allowing patients and doctors to connect to vast databases and learn more about their personal diagnoses in just moments, something that not too long ago could take months or years. However, the data harnessed could be used for the wrong reasons when in the hands of for profit organizations. When consumers opt-in to sharing their data under the guise of finding the cure to a disease, they believe they are making the world a better place but who really stands to profit from that data?
“People do think they are helping the world, helping society, even though they may not as an individual benefit. But if your DNA helps develop a drug for a pharmaceutical company, there is nothing governing what they do. It could be a drug they sell at a high profit but doesn’t help the world become a better place.”Jennifer King, director of consumer privacy at Stanford Law School’s Center for Internet and Society
The lack of transparency is confusing to consumers and this is often an intentional strategy from companies in order to profit off of consumer data. Consumers should be very careful of releasing their most intimate data, their very own DNA. In the effort to learn more information about our history using our genetic data, we could be negatively impacting our future.
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