Consent is still consent

There seems to be a wee bit of confusion about a line in an announcement by the Board for Certification of Genealogists about a key change in its DNA standards adopted at the Board’s October 2020 meeting.

And, of course, since The Legal Genealogist is a member of the BCG Board of Trustees, a reminder just who I’m writing for here: me.

Not BCG.

Nobody, but nobody, speaks for BCG except BCG.

So… my take only.

Here’s what the sentence says: “The changes … eliminate the need for test takers to provide written consent for use of their DNA data, although they must be informed about the pros and cons.”¹

And here’s my take on that sentence: it puts the em-PHA’-sis on the wrong syl-LA’-ble.

In my view, speaking only for myself, the change isn’t focused at all on eliminating the need for consent, but rather on opening up options on how to establish that consent was given.

Prior to the October 2020 changes, there had been a requirement that “Genealogists share living test-takers’ data only with written consent to share that data.”² The Genealogist’s Code of Ethics then spoke in terms of a “signed consent” for using DNA results.³

After the changes, the standard requires that “Genealogists publish personally identifying information about living test takers only with their informed consent.”⁴ The corresponding change in the Genealogist’s Code of Ethics reads: “When working with DNA test results of living people, I will not publish personally identifying information without each test taker’s consent.”⁵

So the key changes here — as I see them — are two-fold:

1. Standard 57 clarifies that what’s really restricted is the publication of personally identifying information. Sitting down with another genealogist to get help understanding our DNA matches, or using our own DNA match data in a certification portfolio, for example, isn’t publication.

2. The standard and the Code clarify that what’s really important when we “seek… DNA from a living person for genealogical research” or want to “publish personally identifying information” about living DNA matches — in the words of the “Genealogist’s Code of Ethics” — is that we get informed consent. The form in which that consent is recorded isn’t critical — the consent is.

So the sentence in the announcement is correct: test takers don’t need to provide a written signed consent. Candidates for certification don’t have to send in tons of signed forms with portfolios that include DNA evidence.

But that doesn’t mean we don’t need to get consent.

Informed consent remains the essential ethical underpinning of the entire process. It’s still true now, as it was before the changes, that we need to ensure there’s informed consent whether we’re taking a DNA test ourselves or asking others to test for us, and whenever we’re disclosing individualized results publicly. That means, at a minimum, having enough information to understand what the pros and cons are of testing in general and testing with a specific company or through a specific tool in particular, what will or may be disclosed by the results, who will or might have access to the results, and what alternative means may be available to obtain the same or similar information while minimizing any risks that are involved.

We want to be sure that we ourselves and all persons we ask to test to help us in our research understand that:

• “DNA test results … can reveal misattributed parentage, adoption, health information, previously unknown family members, and errors in well-researched family trees, among other unexpected outcomes.

• “DNA tests may have medical implications.

• “…[C]omplete anonymity of DNA tests results can never be guaranteed.

• “…[O]nce DNA test results are made publicly available, they can be freely accessed, copied, and analyzed by a third party without permission.”⁶

When we want to use information we get from others, we “inform people who provide information about their families how it may be used, observing any conditions they impose and respecting any reservations they may express regarding the use of particular items.”⁷

All of that stays the same.

So what does the “eliminate the need for test takers to provide written consent” language mean?

It means — to me — what those two numbered paragraphs above say: we don’t have to have or to submit signed written consents from all of our own DNA matches to use our own DNA match data in a certification portfolio or to sit down with another genealogist to work through what our own DNA results mean or in similar private sharing situations. And in situations where we do need consent, we can get it in writing or in an alternative form — for example, a taperecording rather than a writing.

So this change really just offers more options. If I have a cousin who can consent verbally but not in writing, I can still secure valid informed consent. I can record a conversation with that cousin, either audio or video (and — best — both!), that will show I did in fact get informed consent. We are after all in the 21st century using a 21st century tool — and we’re allowed to use other 21st century tools like audio and video recordings too.

The change doesn’t mean I don’t need informed consent, and it surely doesn’t mean I’ll be excused from proving that I got informed consent if I’m ever challenged.

In other words, saying test takers don’t need to provide written consent is putting the em-PHA’-sis on the wrong syl-LA’-ble.

Nothing more.

Cite/link to this post: Judy G. Russell, “Emphasizing emphasis,” The Legal Genealogist (https://www.legalgenealogist.com/blog : posted 25 Oct 2020).

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