Informed Consent Agreement and Beneficiary Agreement

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.

Beneficiary Form

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.

 

 

8 Responses

  1. Kristina Clever 16 February 2018 / 9:31 am

    Blaine, thank you so much for your efforts and for sharing these sample forms with us. I started testing in 2006. Each of my relatives have simply swabbed/spit and handed the tests to me to “do my thing.” I will be adapting these forms and sending them out to the relatives who have already done DNA testing for me and have the forms ready for new testers.

    At this time, I am the only person in my extended family that has interest in doing the DNA and family research. I need to give some serious thought about who to designate as a beneficiary. I would hate to think that access to my DNA data would be “lost” after I die, but I can’t think of a single person who would continue my work.

  2. Jill 16 February 2018 / 9:49 am

    Because I write articles and do presentations, I added a few questions to have them agree (or not) to allow me to 1.) use the results (but not the data) for those purposes; 2.) if they want a copy of whatever I publish/write–most do; and 3.) how “private” they want their names in those circumstances. It expands the purpose of the informed consent.

    • Nancy 16 February 2018 / 12:51 pm

      Great additions Jill! Thank you for sharing those. Can you please clarify the distinction you make between results and data?

      Nancy

  3. Toni 16 February 2018 / 12:33 pm

    Kristina, I suspect you and I are not the only ones in this situation. I wish there was an answer that worked for us. Our local historical society doesn’t want anything other than the things they choose and my family, even though here since 1856, is not important enough. My gggrandfather was the only tailor in town. they have a coat and vest on display but as for genealogy, no. Not interested. If I could find the link between Queen for a Day Jack Bailey and my tailor grandfather it would sure help with that line!

  4. Ralph Oser 16 February 2018 / 2:28 pm

    Blaine – Thanks for both doing these forms and making them available for use.

    I can’t review either until I get better internet access and ditch my phone. But normally I’ve seen interpretation hassles when such agreements are silent or ambiguous on the following questions;

    Intent of the parties as to which substantive and procedural law to apply in the event of subsequent questions.

    What Court do the parties select in the event of disagreement(s).

    And the intend of the signatories to bind their heirs, or not.

    Please incorporate your disclaimers by reference.

    Thanks again to all involved,

    R

  5. Jan E Tripp 17 March 2018 / 8:11 pm

    Has anyone used this form in recruiting? I recently shared this with my cousin who is going to share the cost for a small targeted test study. Our initial reaction is there are too questions and may dissuade people from agreeing to test. Our testers are being recruited via cold calls so there is probably only a limited opportunity to educate on why they should test and provide them with enough background information for an informed consent.

    • Blaine Bettinger 18 March 2018 / 8:43 am

      I agree, there are more questions than I would normally ask. But you can always tailor it to your use.

Leave a Reply

Your email address will not be published. Required fields are marked *