15.7 Informed Consent and Ethics

If a researcher is interested in recommending DNA testing for someone else, they should be knowledgeable about which type of DNA testing will best address the research question. The test taker must give consent and be informed about how companies use and store DNA data. The blog on Your DNA Guide states the following and then suggests five things to consider about informed consent to DNA testing:

“Have you 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.”1

Your DNA Guide makes these five suggestions:

  1. Take privacy seriously.

  2. Explain that DNA testing is accurate.

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

  4. Prepare for dealing with a potential surprise discovery.

  5. Get consent in writing.2

The importance of consent and careful use of information cannot be overstated. “One of the most serious, significant, and potentially life-changing ethical lapses in the area of genealogy is the careless sharing of test result data without having received specific consent of the person whose data is being shared.… Sharing this information with anyone other than the match himself or herself can have enormous implications and is a serious ethical lapse.”3 Researchers assist in keeping privacy laws reasonable and DNA testing available by being responsible stewards of the data that is discovered through DNA testing. “We live in a society that has experienced a rapid change in the perception of privacy brought on by the computer age. The popularity of DNA testing alone shows us that millions of people are willing to share a very personal part of themselves within the databases of the testing companies.”4 It is a privilege to have DNA as a research tool and to be able to use science to overcome challenges where documents and records fail to lead to the truth.

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