NEW YORK (GenomeWeb) – The relationship between minorities and genetic ancestry tests has always been spiked with nuance and, at times, controversy. Concerns about the tests are diverse and often community dependent, with many worrying about data privacy or misuse, including by law enforcement, while others ponder how results might impact a person's cultural identity.
Though people of European descent have long been a key target market for such tests, companies have endeavored to reach out to minority communities as well with, at times, contentious results.
Last month, for instance, Ancestry was forced to pull an advertisement called "Inseparable" from television and YouTube that featured a white man enticing a black woman in the pre-Civil War South to flee north to freedom. As part of his proposal, he gave her a ring.
Some industry observers immediately criticized the ad, highlighting several issues.
Andre Kearns, an African-American genetic genealogist, dissected the ad in a Medium post. Kearns, who is an Ancestry subscriber, called the ad a "missed opportunity" to connect with African Americans and noted that the story was not representative of the reality of the majority of enslaved women in America.
"Most were not living a love story but a daily nightmare of rape and sexual assault they could not control," he wrote.
Arthur Caplan, a professor of bioethics at New York University Langone Medical Center, similarly criticized the ad. "I think it's a historically horrific ad," Caplan told GenomeWeb. "It either reflects an utter ignorance or a willful ignorance of American history," he said. "They are trying to lure in customers with the idea that there were these hidden romances, making that claim in a sea of slavery and Jim Crow," Caplan added.
It wasn't the first time that consumer genomics providers have botched a marketing message. Last year, 23andMe drew criticism for its "Root for Your Roots" campaign, which encouraged customers to support national soccer teams during the World Cup based on their autosomal admixture results. At the time, Caplan authored a piece on Leapsmag imploring customers not to take part in the campaign, accusing the company of "using genetics to sponsor racism" and calling the claim that you could support a team based on genotype "especially foul."
Caplan reiterated his criticism in light of the Ancestry ad. "Again, the companies continue to both whitewash history in offering ancestry information and don't really have an accurate basis to speculate about the social and economic circumstances of anybody," he said.
Ancestry, for its part, has removed the "Inseparable" ad. A spokesperson said in a statement this week that the firm is "committed to telling important stories from history," and that the ad was "intended to represent one of those stories." The spokesperson said the Lehi, Utah-based company, which is a leader in the ancestry testing market, "appreciates the feedback" it received and "apologizes for any offense that the ad may have caused."
A 'historical need'
Despite questionable marketing strategies, some industry observers say that minorities in the US are actually warming to the idea of using consumer genomics services, overcoming an initial hesitance rooted in historical experience.
Those interviewed mentioned the Tuskegee syphilis experiment, a government study of African-American men with the disease who were observed over a 40-year period and not given adequate treatment even after penicillin became available to treat them. They also cite the case of Henrietta Lacks, an African-American woman who died in 1951 and whose cancer cells have been used in biomedical research without her family's knowledge or consent.
According to Alondra Nelson, a professor of sociology at Columbia University and author of The Social Life of DNA, it has taken years for African Americans to grow more comfortable with the idea of submitting a saliva sample to a consumer genomics provider because of the community's historical experiences.
"A lot of historical narratives in black communities are around notorious instances of abuse and mistreatment," Nelson noted. She said that looking beyond that experience has been a "significant hurdle," but as the services have now been available for a decade or longer, African-American consumers have, in general, grown more comfortable with the idea of using them to find out more about their ancestry.
"That historical and scientific racism never goes away, but there are other dynamics, including positive experiences, that allow people to create new forms of community that make it a more heterodox experience than in the early days," Nelson said.
The fact that law enforcement agencies have accessed some databases, including GEDmatch, a free, online genetic genealogy resource, also might dampen some African-Americans' enthusiasm to submit samples for testing.
Earlier this year, for instance, Family Tree DNA also acknowledged that it had in certain cases made its database available to US federal law enforcement, a move that prompted criticism from competitors and industry observers.
"America … has an ugly history of discriminatory law enforcement toward African Americans," Kearns noted. " I can see how recent news stories now detailing how police are using DNA test services to track down suspects might raise suspicions among some African Americans given this history."
Still, he agreed with Nelson that African Americans have shown increased interest in ancestry testing, mostly to learn more about the history of their families and to restore connections with relatives that were erased by centuries of slavery in the US.
"The central issue for African Americans is often about Africans' continental origins," said Nelson. "Genetic ancestry testing is thought of as the answer for that looming question."
African Americans trying to piece together their genealogical history by hunting for clues in libraries and archives are often stymied by the limited documentation on slaves. "The majority of African Americans, like me, descend from ancestors who were enslaved, making our ability to trace back to Africa extremely difficult, if not impossible due to the scarcity of available slave records," Kearns noted. Â "Advances in DNA testing, however, offer us this amazing opportunity to break down research brick walls created by slavery to connect to our roots by analyzing the family history etched within our DNA."
At least one consumer genomics firm specifically serves the African-American community. Washington, DC-based African Ancestry has since 2003 offered Y and mitochondrial DNA haplotype testing to inform customers of the deep ancestry of paternal and maternal lines, respectively.
"Our company exists out of a psychological and historical need, but we use science to fill it," said Gina Paige, president and cofounder of African Ancestry. "It's important because here in America black people in the diaspora are the original victims of identity theft. We walk around not knowing our original names, or languages, or who our family members were," she said. "Using ancestry-informative markers, we are able to answer those questions for black people."
Like Nelson and Kearns, Paige said that interest in DNA testing has increased, partially from word of mouth and also through elevated awareness of ancestry testing in general. African Ancestry tries to reach its customers by catering to a desire for knowledge about their origins.
"All people who sell products identify their target in a language they understand about things that are important to them," said Paige. "We are in this industry the company that is most sensitive to the needs of this consumer."
More detail
Companies continue to improve their admixture reports in order to meet customer demand for more detailed results. Ancestry and 23andMe, among other firms in the space, continue to enhance their estimates, in some cases breaking down a person's ancestry to the subregional level, giving African-American customers, for instance, the ability to know from which regions their ancestors came from based on their autosomal DNA.
Those kinds of enhancements in the services have also impacted other minorities who may have felt that they had been left behind in the past by products that were fashioned to answer the questions of the majority, European-descended population, which is actually homogenous, genetically speaking, compared to differences between populations on other continents.
"If we were to do this fairly, we would draw up a table of [genetic variance] between populations," noted Spencer Wells, who led the launch of National Geographic's Genographic Project in 2005 and currently serves as CEO of Austin, Texas-based consumer genomics firm Insitome. "We would choose the populations to include based on those with the highest [variance]," he said. That would not include a lot of granularity in European populations, but it would have a hell of a lot of detail in South Asia, East Asia, and certainly Africa."
Razib Khan, director of scientific content at Insitome, noted that when some services first launched a decade ago, many customers of Asian descent were not impressed with the results. "Some people would be Punjabi and Tamil Brahmin, so a thousand miles apart, and get back a result that said they were 97 percent South Asian. India is about the same size as the EU. So, when Indian-Americans saw their white friends getting back results saying they were 25 percent Scandinavian, and their result came back and said 99 percent South Asian, they knew there was a difference," he said.
He acknowledged that services have improved for Asians, but results are still not as detailed as they are for people of Northern European descent. Although the genetic differences among descendants from Northern Europe are small, they are represented by six clusters or more, while South-Asian descendants are represented by one or two clusters. "Why is that? Â It's not because the science is driving it," said Khan. "It's because the consumer demand is doing that. Ultimately, you have to balance consumer demand with science and fairness."
Joanna Mountain, senior director of research at 23andMe, said that all of its customers, not just minorities, have an appetite for more detailed ancestry results, and the company is responding to these demands by continually fine tuning its offerings. "When we started telling people about their ancestry, we divided the world into Africa, Asia, and the Americas, and Europe, because that's what the data supported in 2008," she said. More recently, she pointed out that 23andMe has launched an initiative called the Global Genetics Project to collect samples from underrepresented countries, mostly in Africa and Asia, to improve its ethnicity estimates.
"Many people don't realize that this is an evolving service," said Mountain.
An Ancestry spokesperson also noted that the company is "committed to representing global diversity" and said the firm's AncestryDNA service currently covers 350 regions, as well as 300 "genetic communities" — groups of people who may have migrated from one region to another together. The spokesperson said the firm has a "particular focus" on African-American and Hispanic communities, and is "constantly identifying ways to broaden its representation."
The identity question
While companies continue to work on improving their services to meet customer demand, questions around the nature of ancestry testing and its potential impact on minorities linger. Some industry observers think that companies must be more sensitive to the perspectives of minorities going forward, as the criticism of the recent Ancestry "Inseparable" ad and 23andMe's "Root for Your Roots" campaign illustrated.
"Genetics ultimately is so co-mingled with issues of race," said Reed Tuckson, managing director and founder of Tuckson Health Connections. In his role as a public health and research advocate, Tuckson has worked to reduce racial and ethnic disparities in access to genomic medicine. "Given that contemporary America is very contentious and fractious when it comes to race, and the meaning of race, if we are not careful, the way that genetic information is used will always create anxieties for minority communities," he said.
According to Tuckson, the linkage of genetics with race in the public mind could have profound implications in society, fueling the arguments of people who "propagate certain interpretations of genetics to say that people of color are less able than others," and arousing suspicion about law enforcement access to large genetic databases among people who are "already distrustful of the criminal justice system."
Indeed, David Reich, a geneticist at Harvard University, recently authored an op-ed in The New York Times that called on the genetics community to both acknowledge the real genetic differences between populations and to tackle the often racist (and baseless claims) that are made based on those differences.
By abstaining from "laying out a rational framework for discussing differences among populations," geneticists "leave a vacuum that gets filled by pseudoscience, an outcome that is far worse than anything we could achieve by talking openly," Reich wrote.
According to Tuckson, another issue is the question of how the results of these services might impact a person's identity. "At the end of the day, if my identity is tied to me being an African-American male, and I take a test and find out I am more European than African, it can not only have a profound impact on who I am, but also make me angry," he said, noting that discovering European ancestry might bring up "horrible issues around rape" during slavery.
"There are some people for whom this could be devastating information," Tuckson said. "People need to be aware and prepared to deal with the consequences of that kind of information and their sense of who they are."
Claims around connoting genetic ancestry with cultural identity are also challenged by Native Americans, who rely on other means such as tribal membership and kinship to establish membership in a particular community or group.
"Real Cherokee don't need those tests," said David Cornsilk, a professional genealogist and editor of the Cherokee Observer. "The tribe and most tribes have been consistent in refusing to accept DNA as proof of tribal heritage and discourage their members from giving up their DNA to commercial labs such as 23andMe," he said. "When tribes use DNA, it's only to determine relationships, not race."
Cornsilk recounted a situation where a woman and her twin brother took an ancestry test. Though they were certified as one-eighth Cherokee by the Bureau of Indian Affairs the test showed zero percent Native American ancestry. "She's still traumatized by it," he said.
Kim TallBear, an associate professor of native studies at the University of Alberta and author of the book Native American DNA, shared Cornsilk's view. "Tribes are not genetic populations," she said. "People who grew up in indigenous communities have other ways of determining who is Native and who is not," she added. "They are also worried about the use of their data in research projects they do not support."
According to TallBear, Native people "prioritize citizenship, enrollment, kinship, culture, and tradition over genetic markers." She said that they feel that by participating in genetic testing and genetic research not controlled by their community that they are supporting the idea that what it means to be Cherokee or Lakota is a genetic category. "They want to put political and cultural self-determination before genetics," TallBear underscored.
David Mittelman, CEO of forensics genomics firm Othram Genomics and a former CSO at Family Tree DNA, cautioned that companies need to better explain the difference between genetic ancestry and cultural identity.
"A DNA test allows you to understand the genetic background, what are the different peoples in the world that contributed to you," noted Mittelman. "That's not the same thing as answering who you are." Mittelman drew attention to the case of Senator Elizabeth Warren (D-Mass), who last year released results of a genetic test to support her claims of indigenous ancestry.
"She had a test that showed if she had Native-American ancestry," said Mittelman. "The test doesn't show if you're Native American, it tells you that someone in her lineage was Native American," he said. "The test doesn't answer the question of identity, because identity is a philosophical or social question."
According to Kearns, consumer genomics firms have been marketing their tests as an answer to the question of a person's identity, but in his opinion, they are a starting point for genealogical research. "I've learned the most about my ancestry by analyzing and connecting with DNA matches to uncover ancestry," he noted. He said that despite controversies like the "Inseparable" ad, African Americans have an opportunity to continue to test and put pressure on firms like Ancestry to broaden their services and make them more inclusive of the community.
And, he cautioned that while many have overcome initial skepticism towards consumer genomics services in recent years, similar mistakes must be avoided in the future to retain the community's trust.
"With this latest Ancestry ad controversy, the company puts African-American participation in DNA testing and genealogy at risk," noted Kearns. "They need to do better."