Outing the unwitting

There’s an old adage that may date back — if internet sources are to be believed — as far as Roman times.

“It’s all fun and games until somebody gets hurt.”

That’s a lesson that the genealogical community may end up learning the hard way if we cannot convince certain players in the DNA testing world that there’s a big difference between opt-in and opt-out when it comes to informed consent — and if police and prosecutors don’t protect unwitting “genetic informants” in their unthinking quest to solve cold cases at all costs.

Because there are in fact personal and individual consequences to the person who tested his or her DNA purely for genealogical reasons, or even for mere curiosity as to ethnic origins, and whose results are then exposed to and used by police to investigate crime.

And those consequences can be something far far different than what we’re being sold — the whole “crowdsource justice” argument we’re hearing now, particularly from Family Tree DNA as it scrambles to defend its decision to allow law enforcement access to its matching database for crime scene kits.

This month, a Washington State woman learned that her identity as a distant relative of a man arrested for murder in Iowa had been disclosed in one of the search warrants issued in the case.1 She had uploaded her data to GEDmatch.com where it was used to identify the suspect.

Now in that particular case, at least so far, no-one close to the suspect has decided to take any action against the unwitting relative whose test was the key to identifying the suspect.

But let’s rewrite the story a little, shall we? Let’s say it’s one of us, sitting here reading this blog, and we wake up one morning to find that our DNA was used to identify a distant cousin as a cold-blooded killer. Congratulations, we’re told. We’ve helped crowdsource justice in that case.

And that distant cousin we never knew existed? Who now has our name and identifying information?

His name is Vito Corleone.

You do know who Vito Corleone was, don’t you? If not, you might want to see where you can access the Academy-award-winning 1972 film The Godfather and the 1974 Academy-award-winning sequel, The Godfather Part II. And pay particular attention to the revenge part…

Nobody but nobody can guarantee that this won’t happen, sooner or later. Some nut case in some branch of some family directly impacted by one of these cases is going to blame the unwitting genetic informant and go after that person — or that person’s loved ones — for helping identify the bad guy.

But hey… it’s just crowdsourcing justice, don’t you know?

This is all a good thing.

Give up your privacy, without being asked, and then — someday, for some person — maybe end up giving up your personal safety, or that of your loved ones.

Yes, indeedy — “It’s all fun and games until somebody gets hurt.”

Now there will be people out there who think the chances of this happening are small enough that they’re willing to take the risk. That’s absolutely their right. They can choose to accept any level of privacy loss, any level of personal risk, that they choose. Anyone has the right to make this decision and give informed consent to it.

But what about everybody else? All those people who tested and whose identities are now at risk of being disclosed as the unwitting informants in these cases — and who never affirmatively said yes to it?

Family Tree DNA has yet to accept that not saying “no I don’t want to run this risk” isn’t the same thing as saying “yes I’m willing to run this risk.”

It hasn’t yet learned just what informed consent is — and how a company can secure it from its customers.

Here’s a hint: telling customers that their data may very well be exposed to police investigators, and — now, we see — to the bad guys and their supporters as well, unless they opt-out of law enforcement matching is not informed consent.

informed consent

Let’s look for a moment at the textbook definition of informed consent: “an agreement to do something or to allow something to happen, made with complete knowledge of all relevant facts, such as the risks involved or any available alternatives.”2

Agreement in this context can’t be passive. We never get informed consent from someone who doesn’t take some affirmative action to demonstrate agreement.

An example: you and I are attending a conference. We both want the aisle seat, second row, so we can see and hear the speaker. You got there first, and I come up to you and say, “If you don’t get out of that seat, I’m going to push you to the floor.” You ignore me.

Would anybody in the world seriously argue that I now have your informed consent to push you to the floor? Of course not. Your silence in the face of my demand is meaningless.

That’s exactly what an opt-out system is for law enforcement access to our DNA results. It’s demanding that we give up our privacy and potentially become that unwitting genetic informant unless we step forward and say no.

But we’re not agreeing to anything if we do nothing. We may not have received the notice. We may not understand the notice. The notice certainly doesn’t tell us our identities may well be disclosed to the bad guys, not just to the police, so we’re not being told about all the risks. Our silence in the face of that demand is meaningless.

Informed consent can never be secured when the form is “I’ll assume you’re fine with this unless you say no.” It can only be secured when the form is “You have to show me that you’re fine with this by saying yes.”

Opt-out is not informed consent.

And outing the unwitting, who’ve never given informed consent — “It’s all fun and games until somebody gets hurt.”


Cite/link to this post: Judy G. Russell, “Opt-out is not informed consent,” The Legal Genealogist (https://www.legalgenealogist.com/blog : posted 31 Mar 2019).

SOURCES

  1. See “Distant relative learns her DNA led to arrest in Michelle Martinko slaying,” The (Cedar Rapids, Ia.) Gazette, posted 22 Mar 2019 (https://www.thegazette.com/ : accessed 30 Mar 2019).
  2. Wex, Legal Information Institute, Cornell Law School (https://www.law.cornell.edu/wex : accessed 31 Mar 2019), “informed consent.”
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