Forms to document consent
The Legal Genealogist has said it before and will say it again… and again… and again…
The hallmark of ethical genealogy is the utmost respect for the privacy of living people and the disclosure of information about living people only with their consent.1
And — as stressed in last week’s DNA Sunday blog post — the hallmark of ethical DNA testing is informed consent2 — by definition, “an agreement to do something or to allow something to happen, made with complete knowledge of all relevant facts, such as the risks involved or any available alternatives.”3
So when we sit here, a week before the holidays, and think about giving a DNA kit as a gift, that means we’re going to have to make sure the person we give it to gives informed consent to the test.
These days we’re all pretty clear — or we should be — that we need to make sure the recipient understands that the test can produce a whole host of unexpected results, from finding close relatives whose existence wasn’t previously known to discovering that a person believed to be a parent or grandparent has no biological relationship to the test taker at all, and everything in between.
But we also need to make sure the recipient gives informed consent to a whole host of things we often don’t think about asking in advance.
A few examples:
• Does the recipient of the kit to letting us access the results? Or even manage the test?
• If the recipient agrees to let us manage the test, does that include downloading the raw data and uploading it elsewhere, to another company’s or service’s database?
• If we are managing the test, do we have permission in advance to add on other services or tests that are or become available? For example, if our recipient is being tested at Family Tree DNA with a 67-marker YDNA test, do we have the right to go on and upgrade that test to 111 markers or more?
• How are we going to handle the situation if our recipient later changes his mind and wants the test results and sample destroyed? Do we expect him to pay us back for the cost of the test?
• Who has the right to manage the test and make decisions about it after the recipient dies?
These are all critical aspects of informed consent — and they need to be discussed and resolved before the recipient sends in that sample. Otherwise, the least we can expect is hurt feelings; the worst, well … let’s just say nobody wants to talk about lawsuits over the holidays.
So… how do we know we’ve covered all the important bases? How can we be sure our recipient has actually given informed consent on all these bits and pieces?
We borrow — with permission, of course — from the experts.
Two of the leading experts in the use of genetic evidence in genealogy have made informed consent templates available under what’s called Creative Commons licensing — in this case, the CC Attribution 4.0 International License. Under that license, we’re all allowed to freely use and share and even change the templates, even if we use them commercially, but we have to give attribution, link to the license and indicate if we made any changes.
Blaine T. Bettinger, who blogs as The Genetic Genealogist and is the author of The Family Tree Guide to DNA Testing and Genetic Genealogy,4 and Debbie Parker Wayne, another blogger (Deb’s Delvings in Genealogy), editor of Advanced Genetic Genealogy: Techniques and Case Studies5 and co-author with Blaine of Genetic Genealogy in Practice,6 have kindly made sample templates available to us.
These are on an as-is basis. They’re not legal advice. If you use them, you need to carefully consider whether they meet all your needs. For example, they were all prepared before the issue of law enforcement access to genealogical databases blew up, and so there should be a check-box added for whether the test taker wishes to opt into or opt out from law enforcement access to their results as matches. That being said, the following are a great place to start:
• Informed Consent Agreement (Bettinger)
• Beneficiary Designation Form (Bettinger)
• Consent Form for a Project (Wayne)
• Consent Form for a Family Member (Wayne)
Each of these asks, specifically, that the test taker read, review and agree to the Genetic Genealogy Standards put forth by some of the best and brightest in this field.
We all know that getting consent is something we need to do if we’re to maintain the ethical standards of our field.
It isn’t always easy, and making sure we have informed consent can be off-putting.
But forming consent — having a form to review and document the process with our test takers and even for ourselves — is a lot easier thanks to Blaine and Debbie.
Cite/link to this post: Judy G. Russell, “Forming consent,” The Legal Genealogist (https://www.legalgenealogist.com/blog : posted 15 Dec 2019).
- See e.g. Judy G. Russell, “The rights of the living,” The Legal Genealogist, posted 19 Nov 2018 (https://www.legalgenealogist.com/blog : accessed 15 Dec 2019). ↩
- Ibid., “Before we buy that kit…,” The Legal Genealogist, posted 8 Dec 2019. ↩
- Wex, Legal Information Institute, Cornell Law School (https://www.law.cornell.edu/wex : accessed 8 Dec 2019), “informed consent.” ↩
- Blaine T. Bettinger, The Family Tree Guide to DNA Testing and Genetic Genealogy, 2d ed. (Blue Ash OH: Family Tree Books, 2019). ↩
- Debbie Parker Wayne, ed., Advanced Genetic Genealogy: Techniques and Case Studies (Cushing, TX: Wayne Research, 2019). ↩
- Blaine T. Bettinger and Debbie Parker Wayne, Genetic Genealogy in Practice (Arlington, Va.: National Genealogical Society, 2016). ↩
Thank you for making these forms available. Finally a form that covers all the bases so people know what to expect if they submit DNA.
Do think about adding a line about law enforcement access if you use these…