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Nonprofits tackling privacy, ethics and cost issues plaguing genetic genealogy

By Edward Humes For The Spokesman-Review

The DNA investigative tool known as genetic genealogy has enormous power for good, from uniting adoptees with their birth families to solving such brutal crimes as the recent killings of four University of Idaho students.

But this forensic breakthrough comes with baggage: major privacy, ethics and profiteering concerns that could cripple genetic genealogists’ ability to hunt violent criminals by leveraging data from the home ancestry DNA tests 40 million Americans have taken to explore their roots.

Now two new nonprofits are preparing to launch initiatives to tackle these problems.

DNAJustice.org is launching a nonprofit genealogy database that allows users to help police solve crimes by crowdsourcing their genetic data. The nonprofit promises strong privacy guarantees and none of the increasingly high costs imposed by the two for-profit genealogy databases currently used by law enforcement, GEDmatch and FamilyTreeDNA.

The other nonprofit is launching a professional certification board for investigative genetic genealogists that will test applicants’ knowledge, skill and commitment to ethics and privacy. Its founders say the Investigative Genetic Genealogy Accreditation Board represents a major step for a field that is almost completely unregulated, except for state laws in Maryland and Montana.

Together, these nonprofits seek to change what even some of the field’s leading practitioners and advocates call a chaotic “Wild West” environment where anybody can claim expertise.

Privacy rights also have been violated at the two police-friendly for-profit genealogy databases, where investigators are supposed to limit searches to users who have consented. But this hard-to-enforce restriction has been ignored in the past and, according to sources in the genetic genealogy community, it’s still being violated by some in law enforcement. The reason: obeying means skipping over more than half the 1.8 million DNA profiles on GEDmatch, reducing the chances of finding a suspect. It’s not technically illegal – just unethical, a breaking of trust.

Concern about such problems is driving both of these nonprofit initiatives. They are being led by some of the field’s pioneers, including CeCe Moore, a prolific investigative genetic genealogist with bioinformatics company Parabon NanoLabs and leader of the 192,000-member DNA Detectives Facebook group; and Margaret Press, CEO of the nonprofit DNA Doe Project, which identifies the unknown dead from crimes and accidents.

DNAJustice database donors can upload profiles from such companies as 23andMe and Ancestry (which police cannot search). As all donors will consent to police searches, ethical issues go away, Press says. Instead of information about family trees, donors get reports on criminal cases their DNA solves. Press says the project is about to open up to DNA profile donors.

She says DNAJustice will help with price issues, too. Forensics company Verogen, which bought GEDmatch from the two genealogy enthusiasts who created it, now charges police $700 a case for what amounts to the DNA equivalent of a Google search. Four years ago, it was free. FamilyTreeDNA levies a similar fee. Local police departments are being priced out.

DNAJustice’s plan, Press says, is to offer an alternative where searches for law enforcement are free or at very low cost – not to compete with the other databases, but to augment them.

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