Informed Consent for DNA Testing | 5 Things to Consider

Sonja Sarantis

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Informed consent for DNA testing is important. Here are five things to consider when getting informed consent for DNA testing.

Informed consent for DNA testing

Have you have taken a DNA test, and after getting your results, realized that having a relative take a DNA test would be helpful for your genetic genealogy research? But maybe this relative is not familiar with DNA testing. How can you encourage them to take a test while also making sure they understand what’s all entailed in taking a DNA test?

Informed consent for DNA testing is crucial: the tester should understand what all they’re getting into when they send in a spit or swab sample of their DNA. They have a right to know that the test results may include unexpected information, such as not being genetically connected to a parent or grandparent, or finding out your presumed-full sibling is your half-sibling. They may also unexpectedly find people who ARE genetically connected to them, such as when a man unknowingly fathered a child, or a child born in recent generations to one of your relatives was not raised by their parents. People have a right to know that they may learn these or other “secrets” from the past when taking a DNA test.

A misattributed parentage event (MPE), sometimes called a non-paternity event (NPE) or, as I prefer to call it “not the parent expected,” is said to occur in around 10 percent of cases according to several sources. For many people it can be very upsetting and lead to a sense of loss, sadness, and maybe even anger or confused emotions. In some cases the people involved may already be deceased, and so trying to find out what happened or why may have already passed as well, making it difficult to find closure. Imagine how you would feel if you had to tell this “target tester” you asked to perform DNA testing that what they knew about their past was actually not as they thought? Hopefully by now you are realizing that consent is not as simple as it first appears to be! 

Here are five things to consider for getting informed consent for DNA testing.

5 things to consider when getting informed consent for a DNA test

1. Take privacy seriously

When you take a DNA test, you are using your genetic material (aka DNA), so make sure that the tester knows this and understands any privacy considerations. They may want to review the terms and conditions and privacy statements of the testing company where they are submitting their DNA sample. Make it easy for them to find these, and help them understand them.

2. Explain that DNA testing is accurate

DNA testing is an accurate, scientific test.  As they say, “DNA never lies,” but it also sometimes requires additional research or testing to confirm what you think it may be showing. As mentioned above, there is a possibility that testing may uncover a surprise or secret. Make sure that they understand this and are comfortable with the potential risk. 

3. Ask if the tester wants to know their results or manage their test

Before having someone take a DNA test, you should ask them if they want to know the results. Does the tester want to be made aware if you find something unexpected? Or are they just happy to let you use their DNA and don’t care to learn about the findings? If they’re not interested in knowing the results or managing their own DNA test, know that you’re able to manage multiple DNA tests.

When my dad tested, I had merely asked him to test as I knew it was best to have the oldest generation test. Neither he nor I considered the outcome of his test and what impact that may have on our lives (and what a big impact it did have!). Working with his DNA and doing genealogical research led us to his birth family. For us, it was a happy ending, but that may not always be the case.

4. Prepare for dealing with a potential surprise discovery

Before testing, make sure the person knows that there is the possibility of a surprise discovery. If there are unexpected results, have you discussed how to deal with that? Would one or both of you need some support, maybe even counselling? Being prepared will help you through the process. 

5. Get consent in writing

It can be awkward to have these kinds of conversations with your relatives. It might help to have a consent form you can walk through with them. We like these ones that have been shared on the ISOGG website. In addition to confirming that the tester has been notified of possible results and gives permission in the appropriate ways, a consent form can also help you. It shows anyone who might later ask (such as the tester’s relatives or the tester themselves) that you had permission.

Once you have clearly outlined the pros and cons of testing and you are sure your relative understands, if they decide not to take a DNA test, it is important to respect their decision. Maintaining your relationship with your relative is far more important than obtaining their DNA.

After discussing these things with the person you want to test and they agree to test, great! Once you have their results, you can start learning a lot about their family history. Download our free guide to learn the next four steps you should take for identifying those unknown ancestors.

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