Biological ancestry is an important part of genetic counseling. Sometimes we call it race or ethnicity, or ask “What countries are your ancestors from?” I am not quite sure what the difference is between race and ethnicity, though in the workaday world of genetic counseling, I over-simplify it for myself by thinking of race, or more precisely, biological ancestry as relevant to genetic disease issues whereas ethnicity reflects sociocultural issues that are relevant to the counseling end of things.
There is much debate about the ethics, meaning, and utility of the terms “race” and “ethnicity.” The arguments for and against these concepts are intricate and complicated; just thinking about them gives me a headache. While the debate is important to genetic counseling, I want to put those arguments aside for a moment. Instead I want to look at the ways that patients respond to the question about their ancestry, and what those responses tell us about social issues, family relationships, stereotyping, and prejudice.
We have all heard many responses when we pose the question of biological ancestry to patients. The puzzled look, followed by “White.” The consumer-society influenced “Heinz 57.” The patriotic “American.” The historical “My family has been here since the Mayflower” (given the number of times I’ve heard that one, the Mayflower must have held more passengers than Royal Caribbean’s Oasis of the Seas). Of course, many patients are proud of their ancestry.
Responses sometimes reflect social issues. In 1983 when I first started as a genetic counselor, my patients rarely answered that they were Native American. Over time, a certain amount of cachet has become attached to being at least partially Native American, that it somehow makes you exotic or cool if you have some “Indian blood.” Now a surprising number of my patients claim to have Native American ancestry. Yet when carefully questioned as to who in their lineage was Native American, the answer is often along the lines of “Well, my great-great-grandfather lived next door to someone who knew a Cherokee.” In many cases, if they had a nosebleed, they would lose their “Indian blood.” It is an interesting example of how, over time, intense hatred can evolve into a distorted sense of pride toward a population group, an attitude shift which no doubt many Native Americans find questionable.
A patient’s answer may provide some insight into family dynamics. For example, the patient may say they are Swedish. When asked if they are full Swedish, the response can be “Well, we’re also German and Polish on my mother’s side, but my father was full Swedish and we were closer to his family, so we always say we are Swedish.”
Sometimes, prejudice and stereotype rear their ugly heads. I have particularly noticed this when I ask if the patient is Ashkenazi Jewish. More than once, I have gotten a harsh response along the lines of “I ain’t no Jew” accompanied by a derisive facial expression. More subtle stereotyping is evident when patients remark “Well I don’t think I am Jewish but I have a big nose” or “Maybe. I am very good with money.” Then they look nervously at me. Many patients think that I am Jewish, as do many of my colleagues. As much as we don’t like to admit it, we all engage in some level of stereotyping and apparently I fit a common Jewish stereotype – educated, from the East Coast, healthcare professional, a physical appearance that roughly conforms to an idea of “Jewish.” In fact, I am a (ex)Catholic whose grandparents were born in Italy and Poland. Either verbally or with expressions, patients indicate that they are unsure if I am Jewish and worry that their remark offended me. In some weird way I feel like a “victim” of prejudice toward a group that I am not even a member of. The remarks are slightly offensive, but not in the same way they would be to a counselor who is Jewish. Rarely do I hear a patient claim to be Jewish when they are not. Apparently, Native American is much higher on the Racial Coolness Hierarchy Scale than Jewish.
These peculiarities about biological ancestry also play out in the world of genetic ancestry testing. Just what value is that information for one’s sense of self? Is it merely an innocent curiosity, or is there a darker underlying truth about how people conceptualize race or ethnicity? Do people think DNA variants and country of origin are somehow biologically tied to behavior and temperament? If you discover that one of your haplogroups is common in Ireland, will you start drinking excessive amounts of alcohol, have large dysfunctional families, develop a new interest in Lords of the Dance, and write great literature (or whatever your stereotype of how an Irishman behaves) simply because of some DNA polymorphisms? Remember, too, that ultimately we are all out of Africa, wherever our ancestors paused or whoever they bred with along the way.
I would like to hear your experiences and thoughts about asking patients about their ancestry. Please leave comments; they are what make blogs interesting.
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“Rarely do I hear a patient claim to be Jewish when they are not. ”
I actually had a session where I had to question a patient about this: she had a textbook breast/ovarian family history and both she and her mother were negative for the 3 founder mutations (FYI, and subsequent sequencing and MLPA). But I remember thinking it was odd to be questioning the patient if there was a chance she might *not* be Jewish, rather than the other way around!
Hi Bob, thanks for your honest and thoughtful blog post. Prejudice is present in the genetic counseling setting but we don’t ever talk about it. I cannot recall the topic being addressed in the public domain in our profession before. I included several educational resources on prejudice, racism, and discrimination in the online cultural and linguistic competence toolkit, which will be launched soon. However, providing links to existing resources does not replace the importance of sharing experiences, thoughts and feelings, and processing with peers. Thank you for opening up this topic for discussion.
Nancy
Great topic – and a brave one. Someone should do a study on this client-counselor dynamic. It could go in so many fascinating directions.
My personal favorite response to the ancestry question is “Mutt”.
I once worked with a German couple who spoke enough English that I didn’t think I needed an interpreter, until we were knee-deep in the session and I realized some concepts were just not getting through. They didn’t understand the word Ashkenazi, and when I said the word “Jewish” they said, “That is a religion” and acted completely mystified as to why this was relevant to the family history, despite my presenting it in several different ways. I think they may have even been a little offended. I couldn’t tell if this was because they were antisemitic and I was suggesting they might be Jewish, or because the question made me seem prejudiced against Jews. I even wondered, given the German history of antisemitism, if they were simply acting naive as a way to disassociate from that legacy. But there’s my own bias coming through…
I loved reading this blog and the comments. When I saw the response, “Mutt” which is one of my favorites, too. I had to share my most favorite response, “Country Hick”. I thought that this was classic, especially after his partner had just admitted to purposely dressing up for her appointment (in classic 80’s garb in the early 2000’s) so that we wouldn’t think they were uneducated. Talk about social dynamics!
Similar to the “Country Hick” response, I’ll never forget the answer of “Kentucky” in response to the question, “What is your ancestry?”
Hi Bob,
I really enjoy reading your posts. I think that Race and ethnicity are extremely complicated concepts. My favorite response to the question of “What is your race?” is “human”. I have encountered this response in two situations. The first case is one where the concept of “race” was not understood and the second was a couple who were firm believers in anarchy. It just goes to show that you can’t always make assumptions about where you think someone is coming from.
There’s another potential landmine in the room when we discuss race/ethnicity that I was surprised didn’t get mentioned, though that may be geographical in origin. Being in one of the southern states, when I ask a Hispanic patient about country(ies) of origin, I would sometimes get a slightly suspicious, and sometimes slightly hostile pause. I’ve now modified my question to “Going back in the family, what country or countries are your family from?” I often explain that “Hispanic” covers a wide range of countries which differ in their potential genetic issues, especially hemoglobinopathies. That usually diffuses the situation and they tell me where their parents/grandparents were born. I still have a few who insist that their families were always ‘here’. As the political brouhaha about immigration progresses, I’m guessing the level of concern and caution for some folks will also progress.
Here in the midwest, in our experience, many patients claim Native American ancestry, and 95% of the time it is “Cherokee”. The usual story is the grandmother or great-grandmother was “full blooded”. Not sure why so many people claim Cherokee, and not other tribes.
Thank you for such a thoughtful post, Bob!
I wonder, also, how obsolete the question of race/ethnicity/ancestry will become soon to use in genetics because there is so much mixture now. I also find that the further west you go (as in west of the Mississippi) the less people know and are in touch with their “roots”. When I worked in Boston, I noticed that most patients identified with a particular ethnicity, but it’s a lot less common in Colorado. I agree about Native American ancestry – I’ve noticed how often it is mentioned even when the link is miniscule. I also notice how proud Italians are of their ancestry. Individuals often tend to refer to themselves as Italian even when that’s not their predominant heritage. Anyway, I think their are many anectodes and this is a very interesting topic. I can’t even begin to touch on the “Jewish question”. Being myself Jewish, it always seems too loaded and having had some uncomfortable comments in the past, I find myself having a knot in my stomach every time I ask…
Bob —
Thanks for this post. It is a topic that deserves more attention in the GC world. I had a patient who was African-American, with a medium-brown complexion and an AFAP phenotype. In discussing MYH and the test for the 2 common mutations that are usually seen in Caucasians, I found myself feeling uncomfortable bringing up the possibility that he has European ancestry.
I also had a patient once who was found to have a BRCA2 mutation. Her particular mutation is common in the Dutch population. She got that info from another provider who had looked up her specific mutation. Her family was from a nearby country in No. Europe, and she was (surprisingly to me) upset to learn she might have Dutch ancestry. This info, along with some ignorance on the part of the other provider, prompted a frustrating discussion of whether her test should be redone since she’s “not Dutch”.
It will be interesting to see how society responds to the surprises in store for us as DNA testing becomes more commonplace.
This post is facinating. I work in Australia and we often have people call us to ask whether we test for ‘aboriginal heritage’ which we don’t- we’re a clinical service.
Interestingly the driving force behind these queries is thought to be the benefits people can access from the government if they have aboriginal heritage. I feel pretty strongly that if you have no idea whether you’re aboriginal or not then relying on a genetic test in order to access financial benefits is a pretty rotten thing to do to those who really do identify as aboriginal.
I find it interesting to ask people where their family is from- in Australia we are mostly a big mix of people. I come from English, Irish, Scottish, Welsh, German, French Canadian, Dutch and Norweigan heritage for example so I wouldn’t know how to answer myself!
Another interesting dynamic is when someone is a convert to Judaism. I had a woman who brought her mother to the consultation. The mother was an Italian convert to Judaism, and was very put off that I didn’t describe her ancestry as Jewish. We had a small discussion about the difference between Judaism as a religion and as an ancestry to reassure that we saw her as “really Jewish”.
Another patient told the oncologist that she was Jewish, and had a very Jewish sounding name. It wasn’t until I asked her about her ancestry that she told me she was a convert and her relatives were from Ireland. Bet this is a common mistake among non-genetics providers ordering multisite testing at Myriad.
Here’s a short amusing anecdote on this topic. I recently saw a couple, she was Jewish and he was not. We briefly discussed Ashkenazi Jewish carrier testing for her given her heritage. The husband asked if he would need to have the AJ test if he converted to Judaism.
The issue of genetic heritage vs. religion can become more jumbled in our patients’ minds than we might realize.
Bob-
Very interesting discussion, and I’m glad you brought it up. I think you’re a very thoughtful, intellectual guy, so please don’t take this the wrong way; why were you only a little offended because you’re not Jewish, whereas you would have been more offended if you were? Is something only offensive if you’re the victim? I find it offensive no matter what if someone uses discriminatory language or comments, and what those patients said in your presence was quite offensive. Or do I only feel that way because I’m Jewish?
Great discussion and comments. Clearly, the issue of race – as it is perceived by genetic counselors and by patients, as well as how subtle racism and prejudice influences the genetic counseling process – deserves more scholarly attention and discussion in print, on line, and at conferences.
Janice rightly asks why was I only “slightly offended” by the Jewish comments. I think my reaction stems from not being Jewish, and not having been subjected to centuries of profound prejudice and harm. To say that I feel the full weight of that offensiveness is, in my view, disrespectful to Jews and their history, and presumes that I have a greater comprehension of, and experience, with that prejudice than I actually do. I have not walked a mile in those shoes.
In addition, most of the “Jewish” comments made by patients, while inappropriate, are usually not tinged with the deep hatred that would lead me to be highly offended. I think that these patients are guilty of the sin of stereotyping, a transgression that we are all guilty of, to some degree. Of course, stereotyping can be at the root of some serious social problems and so we all need to be sensitive to it.
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