We are naïve if we think our DNA data is safe, and that it will never be used against us.
We are giving away, actually we are paying someone to take, the most valuable thing we own – our full genetic code. They are then selling those data, and making more money off of it, and exposing us to exponential risk.
Genetic testing companies say they have strict policies and procedures to protect customers’ information. But, these firms sell access to the genetic information they collect on an “anonymous” basis to drug companies and others to use for research thereby disseminating our data and increasing the chances of those data being missused.
Researchers have shown that they can trace research subjects’ DNA back to them with ease. And, they say the risk of being identified from genetic information will only get easier as more individuals’ data is collected. National Public Radio did an exposé on this and reported that it’s very easy to identify and trace DNA back to the donor.
Seems like “anonymous DNA” is an oxymoron.Genetic discrimination, or worse, is what is at risk.
A 2008 law called the Genetic Information Nondiscrimination Act or GINA is intended to prevent discrimination from health insurers and from employers on the basis of DNA information. It means that a health insurer can’t force the patient or a family member to get a genetic test. Health insurers can’t use a patient’s genetic information to determine eligibility or premiums, and employers can’t use this information in making hiring or firing decisions. Employers are also prohibited from purchasing this type of information about patients or their family members. But in reality, it would be hard to prove if an insurer or employer did any of these things.
Interestingly, GINA protections do not apply to the military, the Veterans Administration, the Indian Health Service, federal civilian employees in the federal employee health benefits program, or to military members with Tricare.
GINA also has a significant loophole. Its protections don’t apply to life insurance, long-term care insurance, or disability insurance. Its employment provisions generally do not apply to employers with fewer than 15 employees.
Even where GINA protections do exist, there is still cause for concern. For decades, some health insurance companies have found “legal” ways to drop coverage for members that they believed would become more expensive to cover. Some insurance companies even developed software that triggered automatic fraud investigations for patients who received a diagnosis for a condition that would become high cost. It is called Rescission. This “drop when you get sick” practice is now subject to the no-rescission clause of the Affordable Care Act.Time will tell if such abuses will continue and whether further legislation is needed to end the practice, or if this part of the ACA will even survive.
What if the DNA data is stolen?
We should all know better than to think for one second that – “I’m sure my data is safe with those guys.” Breaches of privacy by companies that collect information about people, such as Yahoo, JPMorgan Chase, Target, Equifax, Anthem, have underscored the risks of electronic data.
In 2017, over 5.6 million patient records affected by security breaches were reported to the department of Health and Human Services. Over 1.13 million patient records were compromised in 110 healthcare breaches in the first quarter of 2018.
Medical data is the favorite target of hackers. It is generally believed that your medical information is worth 10 times more than your credit card number on the black market.Family history, demographic data, insurance information,medications, etc. means there’s enough information to completely steal an individual’s identity and commit medication fraud, financial fraud, insurance fraud and a wide array of other crimes.
Sensitive patient diagnoses like HIV, a history of plastic surgery or behavioral health challenges, make medical blackmail a real threat.
We truly have no reason to think that our data is safe in any one of these companies’ hands. No company currently in the DNA testing business is using the blockchain technology, the safest way to manage data.
TimiDNA, the new kid on the block (all pun intended) is built on its own private blockchain. TimiDNA will never sell your data. Further, it will give you all your data, and the ability for you to sell or give that data to whomever you see fit.