Every time I read my Facebook (FB) newsfeed lately, there is a new posting from an adoptee friend or colleague exclaiming fear or excitement (sometimes both) around new information they have just received from 23andMe or some other DNA testing site. “Just found out I have two cousins just outside Seoul!” someone might write. Or “OMG. So-and-So in the Salvadoran Adoptees FB group is my third cousin twice removed! What other revelations does 23andMe have in store?” Still others will comment on their health information that has just come through, trying to process exactly what it means: “Am at a higher risk than average for Celiac disease … Is this a product of my wheat allergy or vice versa?”
To the uninitiated, these posts may be confusing, but their prevalence and implications definitely got my attention. I began to wonder if there is a DNA testing revolution going on in adoptee communities and if so, how might this impact our notions of kinship, identity, and science – as well as our adoptee communities themselves? Complicating matters further is the fact that The New York Times reported earlier this week that the FDA has ordered 23andme to halt selling their product because of claims that the company had not provided requested evidence proving their product’s accuracy. Given the fact that, at just $99, 23andMe is by far the most commonly used genetic testing site, the ramifications of this decision are yet to be seen – particularly in adoptee communities.
A Search for Relatives & Racial Identity
Susan Branco Alvarado, a 41-year-old Licensed Professional Counselor who lives in the Washington D.C. area, is one such adoptee who used DNA testing to get clear answers about kinship and her racial/ethnic identity when she felt she was otherwise out of options. “I started testing in 2006, just to get a basic racial background,” said Branco Alvarado, who used the site ancestrybydna.com. “In 2010, I got the mitochondrial DNA for my birth mother’s lineage. Then in 2013, I did the autosomal, and I found relatives. I did it so that I could officially see if I was Native and Latino, and of Colombian descent, specifically. They could tell me that the other people who matched my sequence were Colombian. It just confirmed that.”
The testing also revealed relatives, which was both incredibly gratifying and unnerving for Branco Alvarado. She said:
“It was really overwhelming because outside of this, I’ve been searching for 20 years, and I’ve had a couple close calls, but this is definitive. Two of the people were people I already sort of knew because I recognized their names from FB Columbian adoptee groups. I’ve talked to all of them in some form or fashion. One of them, who is also an adoptee, is in Europe. She’s found her birth family, and I’m hesitant because I don’t have space in my life to have that happen. I’ve worked so often with people who have done reunions and I just know … I can only conclude the level of emotional burden that it brings, and I can’t do that right now.”
Rebecca Nirmala Peacock, a 38-year-old Indian adoptee, also did genetic testing in order to find family members. Peacock lives in Seattle and is a stay-at-home mom to a little girl she adopted from India. Although she had less success in this than Branco Alvarado, she says that it was still a positive experience overall. Peacock said:
“I thought that I would find a close DNA relative. But the reality is that they really don’t have a lot of South Asians in the 23andMe database. There is two percent [Indians] in the study, and all those people are outside India. I think we have a long way to go until that opens up. The reality check is that there is not a lot to compare to right now. I’m hopeful that in the future, 23andMe will open up a lab there, and people will want to test.”
DNA + Testing + Adoptees = Community
Peacock took the 23andMe plunge with a small group of other Indian adoptees, who did not know exactly what they were getting into. She said:
“I have been able to share genomes with other adoptees from India so we can see how similar and non-similar our genes are. I’m plotting really close to some of my friends from Bangladesh. For me, this isn’t close information, but it’s fascinating, and I’ve learned a lot. I have four DNA relatives. They are very, very distant. All of them are male, and three of them have not contacted me back. One shares .07% on one segment of DNA. He’s from Kazakhstan, and there’s no way we will ever know how we are connected. It was cool to share genomes with him and to know that I’m connected to at least one person.”
It took awhile, however, for Peacock and her friends to decipher the, at times, very scientific data:
“23andMe has the ability to use their message boards to connect. That was really helpful. There was a section for adoptees and one for Indians. They’re trying to get them more streamlined so that it’s easier to use those tools. We connected with some people there, and then we decided to create our own FB group. Our group is called ‘Lost Sarees: South Asian Genetic Ancestry.’ It was developed as an outgrowth of our work at Lost Sarees and our DNA journey through 23andMe. With the many questions we had, we knew we could learn from others and share what we are learning along the way. This group includes adult adoptees, South Asians, and adoptive parents who are beginning to explore DNA history and connections. This group is a forum to gather, connect, and have dialogue about our South Asian genetic ancestry and heritage. We felt that there’s such a small percentage of us who are testing, so we were able to network and connect to better process results.”
As of today, the group has over 90 members. “We found a friend in the field who has been able to help us understand the data,” said Peacock. “It can be overwhelming and confusing. And some people don’t want to know as much.”
Impenetrable Data
Although he sees genetic testing sites as primarily a boon for consumers, Chris Thierfelder, Senior Director of Life Science at the XPRIZE Foundation, also believes that people need more help interpreting results:
“The tools are really outpacing our ability to understand what the tools can do for us. The amount of information that people have access to is staggering. It’s not raw data, but it’s pretty close. As a society, we have not caught up to the impact of what having this information really is. You might find out you might have a huge tendency towards obesity, which might force your hand in becoming healthier and making better choices. On the other hand, you could be part of a genotype that has a higher propensity to have ovarian cancer, but what that means is that you have a higher chance than people who already get those diseases. So if the tendency of those folks is 1 percent, and yours is 1.5 percent, you could be running around with a chicken with its head cut off for no reason.”
For her part, Peacock took her health report (which testing sites deliver before the ancestry report) in stride, although she said that she knows other adoptees who found it frightening:
“You get your health risks, your drug responses, inherited conditions and traits, and health tools. Basically, we looked at our elevated risks, decreased risks, and typical risks for things like Type 2 Diabetes, bipolar disorder, esophageal cancer, stomach cancer, Alzheimer’s. It doesn’t mean you will or won’t get them, but rather what you have a genetic predisposition toward. Some adoptees, when they get that health report, it’s very nerve-wracking because they don’t know how to feel about that, depending on your risk factor. It can be scary.”
To Test, Or Not to Test…
In her adoption therapy practice, Branco Alvarado sees people who she believes could benefit from DNA testing:
“I do have a lot of clients that are racially ambiguous, so I’ve had them and their parents get the testing, and it’s been really helpful. Someone I work with was clearly, in my estimation, African American, but the family was insisting that she was Greek … But she’s gotten the testing and, of course, she’s half African American. So this changed the family narrative. She’s in eighth grade now. She’s got a handle on why she could never understand her hair, and there is a huge difference on how she sees herself. And that’s true of other people as well – it just alters their sense of self and gives them another way to view who they are.”
But Priscilla Wald, a professor of English and women’s studies at Duke University, believes that we as a society need to take a closer look at the pros and cons of defining race in predominantly biological terms before we wholeheartedly embrace genetic testing as a valid means to organize identity. “There have been so many problems based on thinking biologically about race and ethnicity throughout history. What biologists mean when they talk about race and ethnicity, and what lay people mean when they use those terms are very different, and we want to be careful that there is no slippage there,” said Wald, whose work looks at cultural narratives, and narratives of science and medicine. She continued:
“I want to be clear that I think this is cool information that people are connecting with. I just think we need to reflect more on the categories we are setting up. What is the meaning of these categories? What does it mean to find a long lost cousin, and what claims does that person have on you? Do we have more responsibilities to people with whom we share DNA, and if so, why? And what are we reinforcing, and why?”
What We Haven’t Considered
Wald insists that she embraces science and scientific research but simply wants us to explore some of the risks that widespread uncritical DNA testing can pose. She said:
“These sites are not doing enough to contextualize the information and to help people interpret what it means and think about the consequences. The tests are based on mutations in certain populations, and the whole story is certainly not being told by them. But even if they’re accurate, what happens if you discover that you’re not as much a part of this racial and ethnic group as you thought you were, or that you’re part of a racial and ethnic group that you didn’t think you were part of? What about the high percentage of people who think their father is someone who, it turns out, is not actually their biological father? What happens when or if the test reveals this potentially traumatic information? What are the psychological and social consequences of all this information, and have we thought that through?”
Branco Alvarado shares Wald’s concerns as she balances them with genetic testing’s promise. She said:
“I think these sites are ultimately of huge assistance for people to better understand their identities. It comes with a huge risk, too, because many people are doing this with no understanding of what it’s going to be like to find family members. I wish the companies would do a better job of incorporating and explaining some of the risks, including the mental health risks. I don’t want to pathologize the thing, but it’s true.”
An Adoptee Database?
Preferring to meet this revolution in genetic testing with optimism, both Thierfelder and Peacock see the possibility of this new technology to keep building out community. Thierfelder said:
“Adoptees and adoptee groups are certainly using the tools the way they’re intended. That is a really positive thing that people are availing themselves of these services. The whole movement behind 23andMe and sites like it was that they would form communities around this information. You have health concerns around this information, which you can then use to crowd-source and gain a deeper understanding — sites like Patients Like Me, as well, the whole idea was that people with similar health concerns could then form a community around them.”
Peacock has an even grander vision in mind:
“By connecting with other adoptees, I see us creating a database for ourselves because there’s not that many people we could test against. It’s all so up to chance. I guess I’m more hopeful and willing to take a leap of faith because I have nothing to lose at this point. I embarked on this journey, not only for myself but also knowing that one day I may be walking alongside my daughter who may also have the same questions I have. I want to offer my support to her if she chooses to embark on the DNA journey in the future and help other adoptees who may have these same questions.”
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