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.
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.