Last year in the Facebook group Genetic Genealogy Tips & Techniques, we were discussing the need in the community for an informed consent agreement and a beneficiary designation form. Provided below are informed consent agreement and beneficiary designation form that I drafted with very helpful feedback from the GGT&T community early last summer. Feel free to use these agreements/forms pursuant to the disclaimers below, and pursuant to the CC license under which they are distributed!
Please note that this is NOT legal advice. I do NOT make any representation that these forms are legally binding or sufficient for their intended purpose. I highly recommend that you see an attorney if you have any questions or concerns.
Informed Consent Agreement
An informed consent agreement can give you certain rights in another test-taker’s test results, in a way that informs the test-taker about DNA testing and about what rights they are giving up. For example, if you ask your cousin Akira to take a DNA test for you, you want him to provide you with certain rights in the results, such as uploading them to a third-party tool such as GEDmatch, transferring to another company, and so on. You might also want Akira to tell you how much to reveal about him to matches, or whether he wants to know about unexpected results. Indeed, asking Akira about whether he wants to know about unexpected results means that you are informing him of the possibility, which is incredibly important when we’re asking other people to take DNA tests.
Accordingly, here is a sample informed consent agreement (Word document download from Dropbox) that asks the test-taker a series of question and allows them to make a selection based on their comfort level. Below are just a few of the questions/selections on the sample informed consent agreement:
The sample informed consent agreement also ensures that the test-taker has “read The Genetic Genealogy Standards (www.geneticgenealogystandards.com).”
The agreement is distributed under a CC Attribution 4.0 International License, which means that anyone is free to share and adapt the work, even for commercial purposes, IF there is attribution, a link to the license, and an indication that changes were made.
What happens to your DNA test results when you die or become incapacitated? What happens to Aunt Georgia’s results when she dies, if you paid for her test?
A beneficiary designation form allows you to designate someone as the beneficiary or owner of a DNA sample and/or DNA test results upon your death or incapacitation. This can be a way to ensure that family members can access and use your test results in the future. This will become a growing problem as the databases grow, since it is currently unclear how test results are inherited or transmitted upon death, especially if someone other than the test-taker paid for or otherwise facilitated the test. Designating a beneficiary clarifies this issue. Not only can you designate a family member as the beneficiary of your test results, you can have yourself designated as the beneficiary of DNA tests and results that you purchase for other people.
Accordingly, here is a sample beneficiary designation form (Word document download from Dropbox) that can be completed, including space for log in information at each testing company or third-party tool.
The beneficiary designation form is distributed under a CC Attribution 4.0 International License, which means that anyone is free to share and adapt the work, even for commercial purposes, IF there is attribution, a link to the license, and an indication that changes were made.
There was a lot of discussion about whether the informed consent agreement and the beneficiary forms are applicable or necessary for other countries, but a consensus was reached that we would share these as examples for the United States, and other people with experience in other countries can share their comments or documents for consideration.