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Who’s keeping your genetic keys?

As genetic testing becomes more common, the technology poses a widening array of legal and ethical challenges.
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Your DNA holds the keys to many secrets: your identity, your true parentage, your inborn talents, your chances of falling prey to a wide range of diseases. How do you feel about handing those keys to someone else? The answer could determine how you proceed with the search for your family roots.

Because genetic testing is so sensitive, most of the companies involved in DNA analysis for genealogical purposes have set up procedures to assure their clients that their genetic identity and their real-world identity will be held in separate, secure places. The actual testing is generally done by academic labs that are subject to governmental oversight on matters of confidentiality and medical ethics.

Companies like Family Tree DNA and Oxford Ancestors emphasize that their tests look only at specific chemical markers on the Y-chromosome or within mitochondrial DNA — markers that play no apparent role in genetic traits. They say there’s no way that the tests can tell whether you have a chance of developing cancer or any genetically related disease.

However, when you provide a sample of your blood or cells scraped from the inside of your cheek, there’s no way you can separate out just the Y-chromosome or merely the mitochondrial DNA. You’re providing a full set of genetic keys.

Even the Y-chromosome test could serve a crude, not-legally-binding paternity test, although companies warn against using it that way. “It has been,” Bennett Greenspan of Family Tree DNA acknowledged, “but ... I don’t want to be in that business.”

Hank Greely, a Stanford University law professor who advises the Human Genome Diversity Project on ethics, says the current state of genealogical testing isn’t yet advanced enough to pose a lot of significant ethical problems.

Shape of things to come 
As time goes on, however, advances in genetic technology and computer databases are certain to create new opportunities, new ethical challenges and perhaps new legal issues. For example, Greenspan says mitochondrial DNA testing could make it easier for adoptees to find their birth mothers — if the genetic markers are unusual enough.

“I would not at all be opposed to setting up a database that catered to adoptees, because I think this is a way that we’d be able to help them,” he said. “But I’d say that we’re a year away.”

Could the genetic records be subpoenaed? “They probably could,” Greely said, but only in rare circumstances. He listed a couple of theoretical scenarios: “If you’ve disappeared … a corpse is found in a sufficiently deteriorated form, and they don’t know who it is … (or) you’re a criminal suspect, and you haven’t been caught, and there’s DNA left at the scene.”

Even those examples assume that a DNA sample is still being kept someplace. Currently, the 10 to 21 genetic markers used in genealogical databases aren’t accurate enough to point to you personally.

“We’re in a safe situation, because I don’t hold the DNA, I hold the results,” Greenspan said. “There are thousands of people on the planet who have the same Y-chromosome DNA as you, and there are probably hundreds of thousands who have the same mitochondrial DNA as you.”

The debate over genetic genealogy pales in comparison with the controversy over more comprehensive DNA databases, ethicists say. In America, many states routinely draw blood from convicted criminals and even suspects, keeping their “genetic fingerprints” on file for the future. Britain, Australia and other countries are following suit.

Databases are also being established for medical purposes. Most U.S. hospitals are required to draw blood from newborns for genetic screening, and in at least five states — California, Maine, Massachusetts, South Carolina and Washington state — those samples are kept indefinitely, creating an ad-hoc database. The parents may not even be aware that the sample was taken from their children. For Michel, that’s an ethical trend more worrisome than genetic genealogy.

“There’s a drop of their blood in storage …which can reveal any and all information about that person,” she said. “As we learn more, that drop of blood can be made available for more and more information.”

What to watch for
Bioethicists say potential customers should ask themselves — or the companies offering the tests — some key questions:

How is confidentiality protected?

When a private company receives your sample, it generally marks the sample with a code number, then sends it on to an academic testing lab with the code number. For example, Family Tree DNA sends its samples out to the University of Arizona. The university’s lab technicians have no way of knowing precisely who you are, but you’re relying on the private company to keep your identity secure.

Some genealogists have organized surname projects, where they gather the samples, forward them to a private company with their own coding system, then receive the results for distribution to the person being tested and for use in their own database. If you’re asked to participate in such a project, the genealogist as well as the company will have to satisfy your concerns about confidentiality.

Could the sample be used for other purposes?

The companies say “no, but. …” The academic labs may want to recruit you for other genetic projects — for example, the Oxford Genetic Atlas Project. If you enter information about your ancestry on the Oxford Ancestors form, that represents consent to use your information anonymously to build up a database of genetic information. The University of Arizona may ask you to participate in a study on Jewish origins after you’ve filled out the form for Family Tree DNA.

“Nobody’s going to be included in anything without their prior consent,” Greenspan said.

What happens to the DNA afterwards?

To ease any concern that DNA could be put to other purposes, Oxford Ancestors arranges for your sample to be destroyed. In contrast, samples sent to Family Tree DNA are kept in locked refrigerators at the University of Arizona, unless you ask for the samples to be thrown out. Family Tree DNA says that makes it easier to do further tests if the client so wishes. For example, those who took a 12-marker test in the past can opt to have a more precise 21-market test conducted on their old sample.

So far, Greenspan says no one has asked him to have DNA destroyed. “From a genealogical standpoint, they’d probably be shooting themselves in the foot,” he said.

What happens to the data?

“If they say to you, ‘We destroy the DNA,’ that isn’t enough,” said Vicki Michel, a bioethics law consultant and adjunct professor at Loyola Law School in Los Angeles. “Do they destroy the data?”

Oxford Ancestors is stricter than Family Tree DNA on how the genetic results are distributed, due to Britain’s tighter data-privacy laws. The company won’t release the information to anyone but the person taking the test. It’s up to you to make the comparison with potential “genetic cousins.”

Family Tree DNA will do that for you — if you sign a release form, and if someone else who’s signed the same type form matches your genetic markers exactly. The Texas-based company also makes it easier for someone to gather genetic samples from others, send in the samples and compare the results.

Both companies will wipe out your entry in their databases if you want your DNA completely “anonymized” — and if you want the data itself erased, they’ll ask the academic labs to do so.