Genetic ancestry testing: people who don't want to know

It's easy to see how people could feel that way. Some of us are too old and set in our ways to deal with a complete overturn of who we think we are.

Native ancestry is not just an personal identity issue these days. People who are bonafide tribal members by blood are eligible for a share in the tribe's income. Louise had potentially much to lose and little to gain from testing her DNA. It's hard to fault her for that.

On the other hand, just the thought of testing certain bigots for recent African ancestry amuses me highly.

Racial identity is not just about genotype, right? If. Ms. Erdrich wants to identify with the Chippewa, I say fine. My worry is that there will be a backlash against medical sequencing if our community does not stress enough the Gattaca punchline : your genotype does not define you as a person.

I watched the entire four part series, which was quite entertaining from a historical perspective. They tracked down some great photographs and records for many of the participants. Only in the fourth part did they bring genetics into it, and there were a few things that could have been represented with more accuracy.
As for the section above, Louise Erdrich also added that she had spoken with her family members and they did not want her to find her genetic ancestry either. Gates then said something about how it's not just her own personal information to find out. I am aware of the value of tribe membership, so I wasn't at all surprised that she declined to participate, but I was a bit disappointed about the implicit message.

one of the things that seems to crop up in these things is that americans routinely overestimate their native american quanta. jessica alba was shocked that she was only 13% native. eva longaria was a bit disappointed that she was only 30% native. meryl streep was convinced she would have *some* native (she had none).

Louise Erdrich also added that she had spoken with her family members and they did not want her to find her genetic ancestry either. Gates then said something about how it's not just her own personal information to find out.

i thought erdrich said that her tribe said that it wasn't her personal information to give. it was theirs too.

I just checked the video online (the entire series is on the PBS website) and she said she checked with her "extended family" and was told "it's not yours to give, Louise."

If each person's decision were independent, that would be one thing. But what do these companies know about Chippewa ancestry? They know the genotypes of some other people who self-identify as Native American, and they'd like very much to add more self-reported people to their databanks so that they can improve their interpretive abilities. Fair enough.

But that means that every self-identified Chippewa who gives a sample helps to build the genetic picture of identity in that tribal unit. So that every person who contributes may help to *take away* the status of *other people* who self-identify and are genotyped in the *future*.

Individuals should be tested or not as they choose, my viewpoint is personal rights, not collective rights. But the effect of your test on the collective identity is a possibly negative externality of testing -- your genes help to identify others who share distant ancestry with you.

This is an exceedingly insensitive post. Even the person who wrote the review of the series for my local newspaper was able to give a more nuanced view and deeper understanding of Erdich's position on genetic testing and what it might mean to a person of Native American ancestry - and that was from someone who reviews t.v. shows for a living. So nice that you found "hilarious" Erdich's position, when you clearly have no idea why she takes that position, or what it really means. Oh, those crazy nonscientists! Just wanting to pretend they are native! Let's us real scientists all part ourselves on the back for being so objective and rational and science-y.

If only all that vaunted scientific objectivity could help one, you know, actually understanding the context of a person's life.

It's not just insensitive, it's also rude and arrogant. Right to privacy issues are a very important in the genomics discussion, and dismissing opinions sets the field back more than it helps.

let's play this game inverted: how do you know you sensitarians aren't just imposing your normative frame on dr. macarthur? my own impression is that most non-americans simply aren't as sensitive to native issues because americans don't comprehend how deeply we've internalized some of self-critiques of the past generation. stuff you find to be very serious may seem silly to other people because they're operating out of a different frame. also, i think terms like "right to privacy" generally have an american valence. dr. macarthur has a domicile in a nation where public videotaping is ubiquitous and there isn't a bill of rights.

Fggj,

I'm going to try to draw some kind of line between strong discussion and unnecessary inflammation; your comment unfortunately crossed that line, and I've deleted it. For what it's worth, that doesn't mean I disagree with you.

Fog,

Thanks very much for the context. You didn't happen to write down when in the episode this exchange occurs, by any chance? I watched a bunch of excerpts from the episode last night without finding the discussion in question.

John,

Excellent points.

Zuska, Todd,

As I've clarified in my post, the "hilarious" referred to the reviewer's cold, flippant dismissal of Erdrich's decision, not Erdrich's decision itself. I don't necessarily agree with the reviewer's take on Erdrich's decision (although I suspect I lean more towards their point of view than yours). It strikes me, not for the first time, that my sense of humour is not universally shared.

Razib is also right: to a non-American, this whole racial identity discussion is slightly tinged with absurdity, so some insensitivity is hard to avoid. Sorry.

Louise Erdrich's reluctance to undergo genetic testing is likely to go far beyond identity and economic well-being, as a passing familiarity with her books and biographical history will indicate. I thought that Gates was quite respectful and sensitive to this in the program, and in contrast, the reviewer quoted above seems monumentally arrogant and insensitive.

Erdrich's books feature both German American and Native American characters and families; it's not as if she completely ignores or dismisses her European ancestry. She was married to Michael Dorris, whose Modoc (Klamath) heritage was questioned, and whose career and identity were almost certainly built on his claims of Native American ancestry. He and Erdrich had both biological and adopted children, and perhaps her reluctance encompasses their rights to privacy, as well as her own.

To me, the most interesting aspects of the research discussed in Faces of America are the broader cultural contexts, as well as the details, of Gates' genealogical findings - the life stories of his guests' ancestors. The genetic results of percent African, Asian, and European seem somewhat meaningless in comparison. Sure, some of the guests apparently assign particular significance to them, but they appear to be more touched and moved by the personal historical and everyday details that Gates uncovers.

I'm going to tell you a story of why I would be reluctant to do this within my family. This is not a comment about the Erdrich situation, or that of native peoples and broad ancestry questions. I'm just offering another perspective on why a family might discourage testing.

I have 4 siblings. Three of these siblings are very clearly genetically of a certain father. The other one...well...for years I have thought something was up there. (And let me just add that I know my way around genetics professionally.)

One time at a genetic counselor's conference I attended, a speaker said that it could be as high as 19% of people are not the offspring of the parent they were led to believe is their parent. This may vary by cultural group, for all sorts of reasons.

That seems high to me, and I've seen other data to suggest it is lower than that. But we don't really know right now, do we? And I can imagine there could be situations that older members of the family are aware of that they don't want...ah...dredged up.

In my family, I would actually work pretty hard to convince them not to participate in something like this. I think it would do more harm than good. Personally, I might get my own genome done at some point. But I would keep it to myself. However, if my 1 sibling did this, that sibling would turn to me for help with understanding this. I would not be eager to have that conversation with that sibling.

I would be interested to know if any of these efforts discovered misattributed paternity. And the outcome of that. It is something I have rarely seen addressed in these discussions.

For most of my life I have lived with the notion that part of my ancestry is black and Indian via my father's maternal line (I appear white). I wonder, as a male, whether that can be either affirmed or denied. To be blunt, I like being multi-racial and fear it being discounted--it is so much a part of my identity that it would be like dying to refute it at this point. I would hope for a positive outcome, but don't want my identity shattered. Some people don't want to find out something they are that they never knew, I don't want to lose what I have.

I agree with many of the commentators - the decision to test is with the individual, not society or any sub-group of society. However, some of the above comments and, more importantly, the overall discussion also ignores at least two very important limitations of genetic genealogy (and accordingly, how these limitations should shape the conversation).

First, these tests do not yet examine the entire genome and are thus only estimates of overall ancestry (this limitation, however, will become less important over time as whole-genome sequencing becomes more affordable).

Second, these genetic tests only examine a person's Genetic Tree, defined as those ancestors that, merely by chance, contributed some portion of their DNA to the test-taker. The tests do not (at least not yet) examine a person's Genealogical Tree, defined as every ancestor of that particular person. Thus, an extensive portion of the person's Genealogical Tree can be of Native American origin without actually possessing any Native American DNA.

As a result of these limitations, no test-taker should let his or her DNA define their identity, since it fails to capture either the person that they are or the people that they come from. These tests are much more useful to help people find genetic relatives, or gather a very rough estimate of their Genetic Tree.

I wonder if Erdrich (and the other test-takers) was aware of the fact that even if her test results said 100% European, that doesn't mean that she isn't Native American. Her ancestry could in fact be overwhelmingly Native American.

Erdrich's response was not surprising. Genetic testing is a common taboo among Native American tribes. To my knowledge, there's only been a single major study that's looked at autosomal loci in a large Native American sample. PLOS Genet. 3 (2007), pp. 2049â2067.

I think the larger question raised by John Hawks is the more salient one: what happens when one person's decision affects his or her relatives, be they near or distant? I wrestled with this in deciding to make my genome public. But I only had to answer to my own family. I can't imagine the cultural upheaval if and when the Native American version of the HapMap gets done.

If genetic testing is such a taboo among Native Americans, it may not be possible to reliably determine such a person's ancestry -- not enough good baselines for comparison.

I would be intrigued to find out. Certain genetic features mean I am already certain of my parentage, so there would be no issues in the current generation, but there are questions about my great-great-great grandmother. She is said to have been Choctaw, but my great-great grandmother apparently had a tendency to, ah, *enhance* the truth so we're not really sure about that. (And there's no birth record, due to the extreme poverty into which she was born.)

That said . . . well, though the article talks a bit about the possibility of unpleasant surprises in one's distant ancestry, I have to agree with Mariah -- I'd be more concerned about unpleasant surprises in one's immediate ancestry, especially if they're still living.

W.r.t. comment #3, that racial identity is not about genes, that may well be true. But Ms. Erdrich's refusal to not get tested because the answer might conflict with her self-image suggests that in her case she believes that the genes do matter a lot.

The element of the last PBS episode I found most intriguing was Gates' interview with novelist Louise Erdrich, who declined to have her DNA tested because her identity as a descendant of the Chippewa Native American tribe is so important to her. She said that she felt her tribe and family were what made her who she was. And, as she explained to Gates, she "didn't want to add any confusion to it."

Yeah, this is completely confusing. It may be that the reviewer is introducing the spin that makes Erdrich's position seem self-contradictory. But in the reviewer's words, it sounds like Erdrich is simultaneously saying that her identity is cultural and familial in origin, not genetic, but genetic results could somehow make a difference to it, which suggests that it is in fact genetic in part.

But then, people do carry out these double-think strategies all the time. It's entirely possible that Erdrich's thinking is self-contradictory like this, because after all, people do it all the time.

The "I don't want to be tested because the answer might threaten my conception of my identity" position does contain an element of contradiction, jot that this is at all unusual for human beings, or that there's necessarily anything wrong with that. On the one hand, the person who says it is essentially saying "maybe I am, but if I don't know it, it doesn't matter", which suggest that they think the actual genetics don't matter. On the other hand, they think finding out that their genetics are not what they think they are will make a big difference: i.e. it is about the genetics to them.

It's an interesting viewpoint: "The genetics matter a lot, but it they don't matter to the point where I need to answer the question correctly: it's ok if I might be mistaken about the genetics."

Note that I am not saying people shouldn't think this way, only that it's interesting that people do.

And do you really trust that your DNA given to this kind of operation won't silently become part of a searchable database used for finding and prosecuting people based on what turns out to be very bad statistics about DNA samples?

If there's a one-in-a-million chance that your DNA will be a close enough match to a crime scene sample (remembering they only match a few locations, a few genes, not everything) -- and there are a million samples in the database, you're likely to be flagged. What if there are five million people's samples in the database? What about 200 million?

Also from the NYT (do these writers read each others' work?)

http://ideas.blogs.nytimes.com/2010/03/01/in-dna-we-trust-too-much/

citing a Washington Monthly page that won't open, but Google's cache has it for the moment, get it now:
http://74.125.155.132/search?q=cache:http%3A%2F%2Fwww.washingtonmonthly…

[deleted long excerpt from article; see comment below for link. DM]

In case the link works for someone else (the text is there with 'view source'
http://www.washingtonmonthly.com/features/2010/1003.bobelian.html

Wow. My previous comment (#20) is unclear. In part that is because I wrote "jot" when I meant "not", and I wrote "maybe I am, but if I don't know it, it doesn't matter" when it should be "maybe I am wrong, but if I don't know it, it doesn't matter".

But also, it's just kind of unclear.

Let's try again. Ms. Erdrich appears to be contradicting herself if she thinks that her identity isn't about genetics but she thinks that the outcome of genetic testing could somehow invalidate it. (She does use the term "confuse", but clearly she means "invalidate", because there's nothing at all confusing about a test result that says "these markers show no evidence that you have any Native American heritage". And there's nothing remotely confusing about that situation. It's pretty crystal clear: Native American identity based on cultural and familial connections and no genetic evidence (based on the test) of Native American ancestry. It's only "confusing" if you think you need the genetics to have the identity. I suspect that what she means is "I would find it hard to feel Native American after such a finding, and I want to feel Native American even if my genetics aren't Native American at all." That is, it's not going to "confuse" her identity, it's going to "threaten" it. But if that's the case it's clearly not true that she thinks genetics don't matter in her Native American identity. To the contrary, it suggests she thinks genetics are of paramount importance and take precedence over cultural and familial connections.)

One question: Is this the same sort of genetic identity testing that says my friends' 20-lb beagle mix is an Akita?

znz,

Well said (and for what it's worth, I understood you the first time!).

James,

The test used in the program is based on over half a million markers, and can distinguish African, European and East Asian (a proxy for Native American) ancestry very robustly.

Of course it's not that genetics don't matter, it's just that base pairs need to be put in their place. Your prejudice is manifest in your insistence that genetics represents the "correct" answer in regards to self-identity. It's true in the case of transgenic mice, but I vote that human self-determination is in the driver's seat. Did you see Gattaca? Amazingly perceptive film.

Genetic testing for Huntington's disease is pretty spot on in terms of predicting disease, and yet children of patients are rarely opt to get tested. Is this the incorrect choice?

Did you see Gattaca? Amazingly perceptive film.

You mean the movie where the hero risked the lives of multiple people by tricking his way into a key position on a space flight, despite knowing he had a heart condition that would likely kill him during the flight?

Gattaca is an astonishing example of how cinematography, stirring music and attractive actors can fool the audience into actually rooting for someone who, in any sensible universe, would be seen as a reckless egomaniac.

You might label me as some senseless paleface eejit when it comes to societal implications of heritage genetics testing, but I don't have a clue why any human being wouldn't want to know their own heritage.

(Then again, being a European mutt of sorts, ancestry-wise, and being an American who has no emotional investment in the heritage content of her genetics - I don't give a crap how Polish or English or Irish or Scottish or German or French I am or whether anything else is mixed up in there; I may have Roma or Russian or any sorts of other Caucasian-esque ancestry or even some Native American ancestry, and goodness knows, if I had Asian or African or South American or Oceanian ancestry somewhere in there, I'd probably say 'Cool!' instead of 'Oh noes, my ethnic identity!' One thing that irks me is people who are all so proud of the minute amount of Native American ancestry they have in the United States if it's only a tiny part of their ancestry and it's not even a huge part of their life; it's sort of patronizing, I think, toward actual Native Americans. Razib, your comment was illuminating in that I think a lot of Americans who aren't enrolled in a tribe, per se, have a weird way of fetishizing their Native American heritage if they have it, which I find disturbing.)

I can see the reluctance about paternity issues or if genetics would determine one's share in a tribal income base, but if you're so attached to your perceived ethnic identity that you'd freak out if it were proven to be different, you have bigger problems (extra ones if you're financially invested in it in certain ways, such as people who build careers on their ethnic identity. If you are one of these people, you're fucked up.)

It's not very logical to be proud of your genetic ancestry. After all, it's not like you had any control over it.

But then, people illogical, film at 11.

Genetic testing at best will determine ancestral geographic lineage. That is, it tells you where the building blocks for you body came from.
However, It tells you absolutly nothing about who you are. Only your friends, family and perhaps a biography can paint an impressionistic picture of who you might be or might have been.
It also tells you nothing about who you will be in the future. It only hints at what your peak performance might be in the future.

So long as we're being film critics here.

What Gattaca fails to account for is mediocrity. That is, it assumes that those with a genetic advantage will perform to their genetic potential, while those that don't have a genetic advantage are doomed to underperform relative to their advantaged peers.

The truth is that privilege tends to be a better predictor of "traditional success" relative to the general population than genetic birthright and those born to privilege tend to underperform relative to their disadvantaged fore-fathers.

That is not to say that there is not a genetic component to success, but rather that genetic advantages will not always translate into successful outcomes and that struggle is an inherent component of success.

Lastly Gattaca also fails to account for the importance of genetic diversity in the long term health and success of a population. It is precisely genetic anomalies that lead to new species and new traits that are better suited for a particular environment or can lead to leaps forward in evolution. By optimizing a population for short term success you are dooming that population to long term irrelevance and perhaps extinction.

I can think, immediately, of at least one reason a person wouldn't want to know their own heritage: they would rather think of the loving man who helped raise them, or their mother or grandfather, as an ancestor than identify the rapist who contributed genetic material. (My people count tribal membership in the female line, so that none of our children would be excluded because the Cossacks came through again.)

There's at least one other reason why someone wouldn't want that test: if they were worried that other people would discover they had ancestry they considered unsavory. I don't mean "oh, no, my great-grandmother was African," I mean "oh, dear, we really are descended from $specific_nasty_person." We hear about the people who were told that there's a Cherokee woman somewhere in their ancestry; what about a Cherokee who fears that Andrew Jackson is in his family tree?

Come to think of it, there may also be sound practical reasons why someone wouldn't want it known that they were, by some standards, Black or Jewish. It's one thing to say that if your father-in-law can't handle that, you and your spouse will stick together and the hell with him; it's another to dismiss risks of discrimination or even racist violence.

I live in a free and democratic society which is Australia, everyone is entitled to do what they please provided it doesn't impinge on the freedom of others to do or in the Amerindian woman's case, not to do what they want. I try very hard to respect other people's cultures. I come from an immigrant background. I know about the issues of identity caused by belonging to a minority immigrant group. I can empathize. Saying all that, I consider the Amerindian woman's decision stupid and gutless. Most of the stuff about races being concepts not reality comes from the fact that most people are not what they think or say they are racially. The majority of Amerindians are mixed, not pure. The majority of African Americans are mixed, not pure. So both groups are hanging on to identities which are not wholly true and more imagination than reality. And many know it, so they will do anything to avoid having to face that truth.

My ethnic group is Southern European, and Southern Europeans are supposed to be mixed with all sorts of people. Where I was born, the shores of Africa is only 300km away. I decided what my ancestors were is not what I am, and what they were was acceptable to me. I went ahead and did the 23andMe dna tests. My results were frankly quite boring. Sometimes all you learn is you are just very ordinary.

The truth is better than a whole suburb of lies, and families built on deception. I am different from most of you because I would want to know the truth, and any pain caused from finding out the truth you are illegitimate or your granny was illegitimate, will once the pain is over, make you stronger and a better person. What people's reluctant translates to me is this: there is a lot of dissembling in your lives and who you think you are, and your private lives seem like hell to me. So much fear, and some much avoidance.

Ive thought about this a lot. At the moment the fashinable thing to flippantly say is "we are all mixed" and im sure we are in a very scientific way, but recombination, drift and selective forces change things over time. People should think about what they value about thier heritage and respect others if they will respect them and hopefully we can keep this a world diverse and maybe more tolerant place. European, African, Asian and all groups as long as they are decent should be unmolested. Lets value our differences and stop trying to hate people for being different!