Genetic Genealogists discuss Ethical standards

A number of eminent Genetic Genealogists have recently published a paper on the seemingly ignored topic of ethics in Genetic Genealogy. The paper can be reviewed here. Yesterday I read the paper and dashed off my thoughts (before I forget them). Having had another day to think about them I’ve clustered my thoughts into three areas:

  • I don’t think that children should be tested for genealogists. It’s a decision that is, realistically, impossible to undo. I think it’s a decision that only they can make as consenting adults, after all it’s only a hobby. (Any other genetic testing falls outside what I think is the remit of this paper)
  • The document is at rather unstructured. I would have preferred it structured into clear principles, as applying to a tester, a genetic genealogist/sponsor and to genetic genealogy testing firms. Maybe the document was written by iNtuitives ? (MBTI term…)
  • Asking a bunch of genetic genealogists to come up with a set of ethical principles biases the results. It’s like asking a group of whalers to come up with some ethical principles for whaling. Nevertheless, it is a good start, as at least an interested and knowledgeable party is thinking about it.

Here, for reference are the comments I submitted yesterday.

Hi,

Firstly thanks for putting the effort in to prepare this work, it sometimes seems that genetic genealogists are happy to skip over the ethical issues. As background I should say I’m both a tester and a GG. Here are my observations:

1. Are you re-inventing the wheel here ? DNA testing for genealogy is not really different from the DNA testing done by academics, or even pharma companies. Are there any other standards that could/should be used.

2. Have you reviewed the standards with outside organisations that advocate privacy and ethics. For example the NCCL or the EFF (I realize both are US based, but I’m citing them, as a British citizen, because I think they are both relevant). What about the ethical standards used by the Genographic project ?

3. I’m surprised there is no definition of what an ethical DNA testing firm should look like. (Perhaps because no company would currently pass this test ?)

4. Probably most importantly – I do not think that DNA testing of minors is ethical and should be allowed or encouraged. There may be legal or medical reasons for testing, but I’m assuming these are outside the scope of this document. For me the future implications of DNA testing are so unclear that I think that each individual must make their own decisions as an adult.

5. Additional to point 4 I realise that some adoptees may be disappointed to not be able to test until they reach an “age of consent”, however I believe there is in most countries a legal framework for adoptees to find information about their biological parents and I don’t think the GGs should try to work around it. Furthermore I think that any definition of an ethical GGs should include a paragraph that states that their research should not undermine the legal framework relating to adoptees and the privacy of their biological parents. (As a parallel consider the rules about census returns, in the UK there is a 100 year legal restriction on the publication of census returns, even though we, as genealogists, would love to have that information earlier.)

6. I’m not really sure whether some of the guidelines could be better split out as “Best Practices”, for example the paragraph on “Login Information”

7. It’s unclear from the document how the ISOGG will agree these Standards, or how they might be updated in future.

8. I think there should be some reference to the public nature of data made available on the internet, specifically the fact that once any data is made publically available there is no way you can guarantee it won’t remain in the public domain, even after it is withdrawn for the original source,

9. There is a “Genealogical Proof Standard” referenced on page 3, but no definition of what this document is.

10. In terms of presentation I worry that this document doesn’t clearly split up the definition of the standards from discussion on why/how these standards are important. for example in standard No.5 DNA Storage.

11. DNA and the law. Any discussion on ethical standards here should include the fact that and DNA samples should only be provided to legal authorities based on a court order or the consent of the individual.

12. I personally think that there needs to be a stronger stance that the DNA “owner” rights will always over-rule that of any sponsor, so for example should the 2 people “fall-out” in later life then the owner always has the right to ask the sponsor to remove their DNA results “where the sponsor has access to”.

13. There should be some discussion on the ethics of a a DNA sample when the originator dies, I’m sure in most cases this won’t matter, but again the wishes of the originator should be paramount.

Please feel free to leave comments here, but I suspect your time will be better spent commenting directly

Post Publication Edits

  • I screwed up, mixing up the UK-based NCCL and the US-based NCLU, apologies to both organisations.
  • I’ve toned-down one of my comments – the original language was a bit too inflammatory.
  • Removed references to the ISOGG. This paper is not an ISOGG initiative.
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3 Responses to Genetic Genealogists discuss Ethical standards

  1. Thank you for sharing your comments with the committee!

    I agree, the standards do not explain the reasoning behind each one, and I wonder if that would be helpful, or whether it would be too limiting. Any explanation cannot be comprehensive, so would that reduce the efficacy of the standards? Would like to hear your thoughts on that.

    Regarding your point #5, I’m not aware of any U.S. law that guarantees or even mandates privacy for biological parents that give their child up for adoption (or sperm/egg donors, etc.), or that prohibits someone from identifying them. I know that many centers (and maybe some states?) prohibit specific records from being released, but that’s not the same as prohibiting any identification by other means. Are you aware of such a law or regulation? The only way to guarantee a biological parent’s anonymity is to prohibit all DNA testing; even a 10th cousin match could theoretically be used to identify someone, with enough time and work. In my opinion, there is no such thing as biological anonymity in the DNA age, for better or worse.

    Regarding your point #11, does that refer to companies, or to individuals? This document is not meant to apply to companies (that’s a completely different topic for another day), and I can’t envision a scenario where courts would ask an individual for someone else’s DNA.

    Thank you again!

  2. Connie Gray says:

    #5. In the US, the rights of adoptees are determined by the is geography of their birth. Born in Alaska or Kansas? Congratulations! Your constitutionally guaranteed rights have always been protected as you have always had equal access to your OBC, original birth certificate. Born in one of the other 48? Sorry, your obc may or may not be accessible , with or without a court order. This is despite the fact that the 3 circuit court of Federal appeals has rendered an opinion that parents do NOT have a right of privacy from their biological children knowing their identity. Adoptee studies done by the Evan B Donaldson institute are valuable when discussing these topics. Facts: over 98% of parents want contact (read up on the BSE.. baby scoop era)
    abortion rates drop with equal access, DNA tests do NOT
    reveal health issues in families, membership in organizations such as DAR are based on bloodline, not government sanctioned falsified documents. Adoptees have been treated as second class citizens in regards to their own genealogy for long enough. We are done pretending that our heritage doesnt matter. It does and we are taking steps in every state to restore access to original birth certificates for all adult citizens.

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