Did Low-Cost Direct-to-Consumer Genetic Testing Change U.S. Census Results?
Citizens claiming racial diversity increased by 276% in the 2020 census, leading experts to question whether racial diversity is increasing or people are simply choosing to identify as such and how this trend will affect health care. health
Once again we see another unintended consequence of expanded DNA testing by consumers for their own interests and needs. Like NPR recently reported in “The Census Has Revealed a More Multiracial US. A reason? Cheaper DNA Tests,” the growing trend of ordering low-cost direct-to-consumer (DTC) genetic testing to identify cultural heritage (where a family is from) and genealogy (to connect with existing family members ) further educated health care consumers about their cultural roots.
Such knowledge, NPR speculates, allows people to supplement their census survey with more accurate “heritage” classifications.
How does this affect clinical labs? Like Daily Dark covered in “The popularity of direct-to-consumer genetic testing continues to grow, regardless of concerns from providers and privacy organizations”, the popularity of home testing – including DNA testing – coupled with the growing demand for medicine (PM) in healthcare is likely to change the types of test orders that medical labs receive from physicians.
What did the 2020 census show?
The latest US census showed an interesting change from previous census surveys. More Americans identified as racially diverse than in previous censuses. Scientists from several fields of expertise, including demography, sociology, genetics, etc., wonder why.
According to data from the Federal Census Bureau, in the last census, people who identify with more than one race increased by 276%! Scientists are only just beginning to speculate on the reasons for this increase, but three potential factors, NPR reported, emerged:
- More and more children are being born to parents who identify with different racial groups from one another.
- In 2017, the federal government made minor changes to how the census asked questions about race and how those responses were categorized.
- People are reconsidering what they want the government to know about their identity, according to Duke University Press.
The increased incidence of DNA testing for cultural heritage may be an additional factor in the different ways people identified themselves during the census, which contributed to its popularity, NPR Noted. More and more people are buying home DNA tests to find out where their ancestors lived and came from, as well as their family genealogy.
“It is difficult to determine exactly how large the effect of these tests on the census results,” NPR reported. “But many researchers agree that as the cost of home kits has fallen in recent years, they have helped shape a growing part of the country’s ever-changing ideas about the social construct that is race.”
How the census changes government policy
Pew Research noted that although only about 16% of Americans have taken an ancestry DNA test, the marketing efforts of “companies such as 23andMe and Ancestry.com, which operates the AncestryDNA service, should not be underestimated.” -estimated”. NPR reported. They are broad in scope and these efforts could impact how people view race and ethnic identity.
For most of human history, social experience and contemporary family history have driven how people have identified themselves. However, low-cost DTC genetic testing could change that.
One of the concerns of sociologists and demographers about this trend is that the U.S. census is an important tool in politics, the protection of civil rights, and even how researchers measure things like disparities in access to health care.
“You’re going to have a lot more people who aren’t part of marginalized groups in terms of social experiences claiming to be part of marginalized groups. When it comes to understanding discrimination or inequality, we’re going to have wildly inaccurate estimates,” says Wendy Roth, PhD, associate professor of sociology at the University of Pennsylvania. NPR.
Choose your racial identity
In “Genetic Options: The Impact of Genetic Ancestry Testing on Consumers’ Racial and Ethnic Identities”, published in the American Journal of SociologyRoth and fellow researchers have hypothesized that DTP home DNA testers do not fully accept the results, but rather choose based on their identity aspirations and social evaluations.
They developed the “genetic options” theory, “to explain how genetic ancestry testing influences the ethnic and racial identities of consumers.” They wrote: “The rapid growth of genetic ancestry testing has raised concerns that such testing could transform the racial and ethnic identities of consumers, producing ‘genetized’ identities determined by genetic knowledge.”
However, a more healthcare-related motivation for taking a DTP DNA test is to learn about one’s potential risks for chronic family diseases, such as cancer, heart disease, and diabetes, etc.
In “As consumer demand for ancestry and genealogy genetic testing declines, leading genomics companies are exploring ways to commercialize the aggregated genetic data they have collected,” Daily Dark noted that, faced with lagging sales and layoffs of employees, genomics companies in the genealogy DNA testing market are now focusing on the medical aspects of consumer genomics data that they have already compiled and aggregated .
According to Joe Grzymski, PhD, scientific director of Renown Health and associate research professor of computational biology at the Desert Research Institute, a research campus of the University of Nevada Reno, the consumer market will become more integrated into the experience. health care.
“Whether this happens through your primary care physician, your large integrated health network, or your payer, I believe there will be profound changes in society’s tolerance for the use of genetics for prevention,” he said. GenomeWeb.
Regardless, as Daily Dark reported in 2020, sales of genetic tests from Ancestry and 23andMe show the market is cooling. So, with less than 20% of the population having taken DNA tests and with sales slowing, genetic testing may not affect responses to the next US census, scheduled for April 1, 2030.
In the meantime, clinical laboratory managers should understand how and why more consumers are interested in ordering their own medical laboratory tests and incorporate this trend into their laboratory’s strategic planning.
The census revealed a more multiracial United States. A reason? Cheaper DNA tests
Population percentage and percentage change by breed: 2010 and 2020
Revisions to Federal Race and Ethnicity Data Classification Standards
Churning Races in the United States: Shifts in Racial and Ethnic Response Between the 2000 Census and the 2010 Census
About half of Americans agree with DNA testing companies sharing user data with law enforcement
Genetic Options: The Impact of Genetic Ancestry Testing on Consumers’ Racial and Ethnic Identity
With consumer demand for ancestry and genealogy genetic testing declining, major genomics companies are exploring ways to commercialize the aggregated genetic data they have collected.
Consumer Reports identifies ‘potential pitfalls’ of direct-to-consumer genetic testing
The popularity of direct-to-consumer genetic testing continues to grow, regardless of the concerns of providers and privacy organizations