The rules of the DNA testing road

There are periodically new entrants to the DNA testing arena and, when those new entrants appear, the one thing The Legal Genealogist wants to review is their terms and conditions.

So with the surge of interest in LivingDNA — a relatively new British company offering (at the moment) only ethnicity and geographic locating finding — it’s time to look at terms and conditions there.

At the moment, LivingDNA’s test is best described as a “biogeographical ancestry test.”¹ It’s aimed at identifying ethnic origins and placing your ancestors within a localized geographic area. It’s focused on the British Isles at the moment, with plans to expand to Europe and beyond, and it also plans on offering cousin matching in the future.

Now, a reminder: terms and conditions — terms of use — are “the limits somebody who owns something you want to see or copy or use puts on whether or not he’ll let you see or copy or use it.”² In this case, the terms of use govern whether we can use the LivingDNA service and, if we do, what rights we’re giving LivingDNA.

As savvy online genealogists we all know that we should read every last word of the terms of use and understand them before we agree to them by using a website.

And as human beings in a technological age we still generally just click through because, after all, what choice do we have? If we want to use LivingDNA — and many of us do — we have to agree to the terms of use.

So what are we agreeing to this time?

In many respects the terms are what we’ve come to expect in DNA test company rules:

• We have to be of legal age and submit only our own sample or a sample of a person for whom we have legal authority to act.³

• We have to ensure that what we’re doing — testing and accessing our results — is legal where we live.⁴

• We expressly authorize the company to conduct a DNA test on the sample and provide the results to us.⁵

• We need to protect our own passwords for the site, and let the company know if it’s compromised.⁶

• We can’t monkey around with the security of the LivingDNA site — no hacking.⁷

• There are the usual “we don’t have any liability to you in any way” clauses.⁸

• And there are the usual you have to indemnify us if you cause us a loss. Meaning that we have to pay them if we monkey around with the site or submit somebody else’s sample and they get sued or we violate some third party’s intellectual property rights.⁹

• The company reserves the right to transfer its rights under the contract to someone else — sell out, basically — but the same contract terms apply to the new owner in that case.¹⁰

• And any disputes are going to be heard in British courts under British law.¹¹

LivingDNA also requires that we agree to use “(the) site and the information on it for the purposes of researching your ancestry, or for other uses that we have specifically otherwise authorized, and in a way that complies with all applicable laws, and without infringing any third party intellectual property rights.”¹² It emphasizes that:

The Living DNA test is made available to you for the purpose of researching and understanding ancestry and not for any other purpose. More specifically, you should not attempt to use the results for any medical purpose including that of medical diagnoses. The types of test used for medical diagnoses are very different and more precise than the tests we use for ancestry research purposes. The type of test that we use has been developed for research purposes, and not for clinical diagnoses, nor to determine parentage.¹³

It warns, in a separate but referenced Considerations of Testing page, that “The results of your Living DNA ancestry test may show that your ethnicity is not what you expect. The results (and your raw data) may also show you that people who you thought were relatives, may in fact not be biologically related to you. In the course of researching your ancestry using your raw data, you may discover relatives or branches of your family tree that you were not aware of.”¹⁴

Those warnings go on: “Whilst our Living DNA ancestry test results will not reveal any health information to you, and despite the fact that our test has not been validated for diagnostic purposes, your raw data is capable of revealing a lot about you if further processing or analysis is carried out. For example, despite the fact that our test has not been validated for diagnostic purposes, and should not be used for that purpose, you may infer through your own further analysis/processing that it may, for example, show: You may have an elevated chance of developing certain medical conditions; and that You may have a lower risk of developing certain medical conditions.”¹⁵

It adds: “You should view the decision to take a DNA test, and to receive information about your genetic makeup as permanent, and also be aware that genetic science is a relatively new field that is developing quickly. This means that what you can learn from your genetic information in the future is likely to increase significantly, and potentially in ways that we cannot currently predict. … You may find that in future, certain bodies may require you to disclose that you have had a DNA test, and may in time require you to reveal your genetic information to them. It may not be open to you to decline to answer this question, and providing an inaccurate response may be fraudulent. In particular having to reveal your raw data may be prejudicial to you.”¹⁶

One thing that isn’t clear on the LivingDNA site is whether testing by itself constitutes an opt-in to the research projects the company intends to undertake. It sounds that way, on the Research Consent page: “At Living DNA we offer customers the ability to find out more about themselves by paying for DNA testing services. While this is our main business model, we also want our services to benefit society as a whole; for example, by research that helps us understand more about our global population make up and health.”¹⁷ The page then says we can “opt out of this project at any time”¹⁸ but without saying specifically how.

This part of the terms really needs to be clarified.

There are a few clauses in the LivingDNA terms that I haven’t seen in other companies’ DNA testing terms.

One is the requirement that you send a test sample in within six months of buying the kit.¹⁹ With other companies, you can stock up and buy kits when they’re on sale and use them as needed. Not with LivingDNA.

It also says it only has to try twice to get an accurate result: if it can’t get a good result with one kit, it’ll send out a replacement. But “If we are unable to conduct a sufficiently accurate test using the DNA material provided with the replacement sampling kit, no further action need be taken by us, and no refund will be provided to you.”²⁰

And it has special protections for children: if you submit a sample for a child, you won’t be able to download the raw data; and the sample and results will be destroyed within 12 months of the child’s 18th birthday unless the now-adult-child agrees to keep the test result.²¹

So… bottom line… read the fine print. If you’re okay with the terms, go ahead and test. If you’re not comfortable with what the company requires, don’t test. There really isn’t a third choice.

SOURCES