Your DNA is the most personal, valuable thing you own.
Every cell carries the full sequence, including the mutation
pattern that makes it uniquely yours.
I wrote two posts about receiving the Ancestry DNA kit as a Christmas present, and that the results confirmed some long-held assumptions about my family tree. I still consider it to be fun, creative and thoughtful
because it answered some questions I had.
Lately however, these at-home DNA kits have made headlines.
In fact, last November, just as the DNA kits were being
advertised as the perfect holiday gift, New York Senator Chuck Schumer announced he asked the Federal Trade Commission to “take a serious look at this
relatively new kind of service and ensure that these companies have clear, fair
privacy policies.”
Privacy.
What if the most personal, valuable thing I own wound up in
the wrong hands?
My biggest fear, immediately, became of the insurance
lobbyists. If they were granted access to these consumer databases, could it
have a detrimental effect on the healthcare system in this country?
Could they determine coverage denials based on certain DNA
mutations?
What could that mean for my children?
In response to Sen. Schumer, legitimate genetic testing
companies have promised to not sell or give away this information without
consent.
“We respect and agree with Sen. Schumer’s concern for customer
privacy and believe any regulation should match the commitments we make to our
customers,” Ancestry said in a statement. “We do not sell your data to third
parties or share it with researchers without your consent.”
Unfortunately, a broad consent is part of the initial
contract the consumer makes with such company when a test is submitted for
analysis.
Would I have any knowledge or awareness of when or if a
company or law enforcement agency goes too far?
And what if, despite best efforts, my biggest fear is
realized and health insurers get access?
Did I truly understand what I agreed to?
The truth is, no – I didn’t.
Consumer Protections
Need To Keep Up
Even with the fears I’ve highlighted, there is some good
that can come from this.
What if these at-home DNA kits can unlock the cure for Type
1 Diabetes?
What if there was a way to detect Celiac Disease or
Parkinson’s before its onset?
What if we can then
eradicate them?
Because there is such potential, it is my hope that
regulations can be put into place so a person’s DNA sequence can’t be used against them.
Ancestry has also stated that a person could log on to their
Privacy Center and delete their genetic information. However, even if the
sample is physically destroyed, once it’s digitized, it’s difficult to make
completely anonymous. If consumers aren’t capable of knowing how their DNA is
used, would they be able to prove an employer fired them because they now have the risk of an expensive diagnosis?
Would this person then receive the shock of a suddenly
higher insurance premium, or worse, a flat out denial and be able to prove his
privacy was violated?
It’s not likely.
Your Sample Could Be
Subpoenaed In Court
Even more timely – decades old homicides are being solved
and serial killers who went into hiding long ago are being unmasked thanks to
consumer DNA databases.
The Golden State Killer was apprehended through a match to a distant relative, and investigators were able to build his family tree before
his capture.
Michelle McNamara dwelled on this idea in her book, I’ll Be Gone In The Dark. She entered
the samples she had access to into a public Internet database, GEDmatch. When I learned of its success, chills ran down my
spine.
Society as a whole deserves justice for these horrific
crimes, but especially the victims and their families. While cities were
terrorized, it was the families who suffered an undeniable tragedy.
Can we trust law enforcement to not go too far?
Police in California plan to use a similar process to track
down and identify the Zodiac Killer.
Both Ancestry and 23andMe said they do not work with law
enforcement unless they receive a court order, adding that they did not receive
on regarding GSK. Ancestry hasn’t received such a request in 3 years, but did
report it released a customer’s DNA profile to police in compliance with a
search warrant in 2014.
In a statement from 23andMe, police requested information
for 5 Americans and the company “successfully resisted the request and
protected our customers’ data from release to law enforcement.”
Plus, the genotyping used in the criminal database, CODIS,
is very different than what is used for the private sector. Even if police are
presented a situation in which their testing would be useful, they still face
the legal and technical limitations that are usually a deterrent.
The answer is it’s possible, but it’s rare.
Would you submit your DNA for a genealogy test?
Is the benefit this could have on society as a whole worth the potential privacy risk to its citizens?
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