The Illusion of Inclusion — The “All of Us” Research Program and Indigenous Peoples’ DNA

Posted in Articles, Health/Medicine/Genetics, Media Archive, Native Americans/First Nation, United States on 2020-09-13 02:16Z by Steven

The Illusion of Inclusion — The “All of Us” Research Program and Indigenous Peoples’ DNA

The New England Journal of Medicine
Issue 383 (2020-07-30)
pages 411-413
DOI: 10.1056/NEJMp1915987

Keolu Fox, Ph.D.
University of California, San Diego

Raw data, including digital sequence information derived from human genomes, have in recent years emerged as a top global commodity. This shift is so new that experts are still evaluating what such information is worth in a global market. In 2018, the direct-to-consumer genetic-testing company 23andMe sold access to its database containing digital sequence information from approximately 5 million people to GlaxoSmithKline for $300 million. Earlier this year, 23andMe partnered with Almirall, a Spanish drug company that is using the information to develop a new antiinflammatory drug for autoimmune disorders. This move marks the first time that 23andMe has signed a deal to license a drug for development.

Eighty-eight percent of people included in large-scale studies of human genetic variation are of European ancestry, as are the majority of participants in clinical trials.1 Corporations such as Geisinger Health System, Regeneron Pharmaceuticals, AncestryDNA, and 23andMe have already mined genomic databases for the strongest genotype–phenotype associations. For the field to advance, a new approach is needed. There are many potential ways to improve existing databases, including “deep phenotyping,” which involves collecting precise measurements from blood panels, questionnaires, cognitive surveys, and other tests administered to research participants. But this approach is costly and physiologically and mentally burdensome for participants. Another approach is to expand existing biobanks by adding genetic information from populations whose genomes have not yet been sequenced — information that may offer opportunities for discovering globally rare but locally common population-specific variants, which could be useful for identifying new potential drug targets.

Many Indigenous populations have been geographically isolated for tens of thousands of years. Over time, these populations have developed adaptations to their environments that have left specific variant signatures in their genomes. As a result, the genomes of Indigenous peoples are a treasure trove of unexplored variation. Some of this variation will inevitably be identified by programs like the National Institutes of Health (NIH) “All of Us” research program. NIH leaders have committed to the idea that at least 50% of this program’s participants should be members of underrepresented minority populations, including U.S. Indigenous communities (Native Americans, Alaskan Natives, and Native Hawaiians), a decision that explicitly connects diversity with the program’s goal of promoting equal enjoyment of the future benefits of precision medicine.

But there are reasons to believe that this promise may be an illusion. Previous government-funded, large-scale human genome sequencing efforts, such as the Human Genome Diversity Project, the International HapMap Project, and the 1000 Genomes Project, provide examples of the ways in which open-source data have been commodified in the past. These initiatives, which promised unrestricted, open access to data on population-specific biomarkers, ultimately enabled the generation of nearly a billion dollars’ worth of profits by pharmaceutical and ancestry-testing companies. If the All of Us program uses the same unrestricted data-access and sharing protocols, there will be no built-in mechanisms to protect against the commodification of Indigenous peoples’ DNA…

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Race and Media: Critical Approaches

Posted in Anthologies, Books, Communications/Media Studies, Forthcoming Media, Literary/Artistic Criticism, United States on 2020-08-12 00:43Z by Steven

Race and Media: Critical Approaches

New York University Press
December 2020
320 pages
6.00 x 9.00 in
11 b/w illustrations
Hardcover ISBN: 9781479895779
Paperback ISBN: 9781479889310

Edited by:

Lori Kido Lopez, Associate Professor in Media and Cultural Studies
University of Wisconsin, Madison

A foundational collection of essays that demonstrate how to study race and media

From graphic footage of migrant children in cages to #BlackLivesMatter and #OscarsSoWhite, portrayals and discussions of race dominate the media landscape. Race and Media adopts a wide range of methods to make sense of specific occurrences, from the corporate portrayal of mixed-race identity by 23andMe to the cosmopolitan fetishization of Marie Kondo. As a whole, this collection demonstrates that all forms of media—from the sitcoms we stream to the Twitter feeds we follow—confirm racism and reinforce its ideological frameworks, while simultaneously giving space for new modes of resistance and understanding.

In each chapter, a leading media scholar elucidates a set of foundational concepts in the study of race and media—such as the burden of representation, discourses of racialization, multiculturalism, hybridity, and the visuality of race. In doing so, they offer tools for media literacy that include rigorous analysis of texts, ideologies, institutions and structures, audiences and users, and technologies. The authors then apply these concepts to a wide range of media and the diverse communities that engage with them in order to uncover new theoretical frameworks and methodologies. From advertising and music to film festivals, video games, telenovelas, and social media, these essays engage and employ contemporary dialogues and struggles for social justice by racialized communities to push media forward.

Contributors include: Mary Beltrán, Meshell Sturgis, Ralina L. Joseph, Dolores Inés Casillas, Jennifer Lynn Stoever, Jason Kido Lopez, Peter X Feng, Jacqueline Land, Mari Castañeda, Jun Okada, Amy Villarejo, Aymar Jean Christian, Sarah Florini, Raven Maragh-Lloyd, Sulafa Zidani, Lia Wolock, Meredith D. Clark, Jillian M. Báez, Miranda J. Brady, Kishonna L. Gray, and Susan Noh.

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Large DNA Study Traces Violent History of American Slavery

Posted in Africa, Articles, Canada, Caribbean/Latin America, Europe, Health/Medicine/Genetics, History, Media Archive, Slavery, United States on 2020-07-24 03:03Z by Steven

Large DNA Study Traces Violent History of American Slavery

The New York Times
2020-07-23

Christine Kenneally


An 1823 cross-section diagram of a ship used to carry enslaved people. incamerastock/Alamy

Scientists from the consumer genetics company 23andMe have published the largest DNA study to date of people with African ancestry in the Americas.

More than one and a half centuries after the trans-Atlantic slave trade ended, a new study shows how the brutal treatment of enslaved people has shaped the DNA of their descendants.

The report, which included more than 50,000 people, 30,000 of them with African ancestry, agrees with the historical record about where people were taken from in Africa, and where they were enslaved in the Americas. But it also found some surprises.

For example, the DNA of participants from the United States showed a significant amount of Nigerian ancestry — an unexpected finding, as the historical record does not show evidence of enslaved people taken directly to the United States from Nigeria.

At first, historians working with the researchers “couldn’t believe the amount of Nigerian ancestry in the U.S.,” said Steven Micheletti, a population geneticist at 23andMe who led the study…

…The 23andMe project found this general pattern, but also uncovered a startling difference in the experience of men and women between regions in the Americas.

The scientists calculated that enslaved women in the United States contributed 1.5 times more to the modern-day gene pool of people of African descent than enslaved men. In the Latin Caribbean, they contributed 13 times more. In Northern South America, they contributed 17 times more.

What’s more, in the United States, European men contributed three times more to the modern-day gene pool of people of African descent than European women did. In the British Caribbean, they contributed 25 times more…

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Genetic Consequences of the Transatlantic Slave Trade in the Americas

Posted in Africa, Articles, Canada, Caribbean/Latin America, Europe, Health/Medicine/Genetics, History, Media Archive, Slavery, United States on 2020-07-24 02:41Z by Steven

Genetic Consequences of the Transatlantic Slave Trade in the Americas

The American Journal of Human Genetics
Published: 2020-07-23
37 pages
DOI:10.1016/j.ajhg.2020.06.012

Steven J. Micheletti
23andMe, Inc., Sunnyvale, California

Kasia Bryc
23andMe, Inc., Sunnyvale, California

Samantha G. Ancona Esselmann
23andMe, Inc., Sunnyvale, California

William A. Freyman
23andMe, Inc., Sunnyvale, California

Meghan E. Moreno
23andMe, Inc., Sunnyvale, California

G. David Poznik
23andMe, Inc., Sunnyvale, California

Anjali J. Shastri
23andMe, Inc., Sunnyvale, California

23andMe Research Team
23andMe, Inc., Sunnyvale, California

Sandra Beleza
University of Leicester, Leicester, United Kingdom

Joanna L. Mountain
23andMe, Inc., Sunnyvale, California


GettyImages

According to historical records of transatlantic slavery, traders forcibly deported an estimated 12.5 million people from ports along the Atlantic coastline of Africa between the 16th and 19th centuries, with global impacts reaching to the present day, more than a century and a half after slavery’s abolition. Such records have fueled a broad understanding of the forced migration from Africa to the Americas yet remain underexplored in concert with genetic data. Here, we analyzed genotype array data from 50,281 research participants, which—combined with historical shipping documents—illustrate that the current genetic landscape of the Americas is largely concordant with expectations derived from documentation of slave voyages. For instance, genetic connections between people in slave trading regions of Africa and disembarkation regions of the Americas generally mirror the proportion of individuals forcibly moved between those regions. While some discordances can be explained by additional records of deportations within the Americas, other discordances yield insights into variable survival rates and timing of arrival of enslaved people from specific regions of Africa. Furthermore, the greater contribution of African women to the gene pool compared to African men varies across the Americas, consistent with literature documenting regional differences in slavery practices. This investigation of the transatlantic slave trade, which is broad in scope in terms of both datasets and analyses, establishes genetic links between individuals in the Americas and populations across Atlantic Africa, yielding a more comprehensive understanding of the African roots of peoples of the Americas.


Figure 1 Location of Individuals and Cohorts
Arrows highlight the general direction of the triangular trade routes between continents during the transatlantic slave trade. Pie charts indicate the documented number of enslaved people embarking out of regions of Africa (∼12.5 million total) and disembarking in regions of the Americas (∼10.5 million total) between 1515 and 1865. Representatives of regions of the Americas and Europe indicated that they each have four grandparents born within the same country or US state. Representatives of Atlantic Africa either indicated four grandparents born within or historical ties to a country. Points indicate the ∼16,000 unique grandparental geo-coordinates provided by participants. ∗Cape Verde is an Atlantic African island country that, in the 15th century, was colonized by the Portuguese and inhabited primarily by enslaved people from Senegambia.

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I Don’t Need a DNA Test to Tell Me How Black I Am

Posted in Articles, Health/Medicine/Genetics, History, Louisiana, Media Archive, United States on 2019-04-17 14:08Z by Steven

I Don’t Need a DNA Test to Tell Me How Black I Am

The New York Times
2019-04-16

Erin Aubry Kaplan, Contributing Opinion Writer


Simone Noronha

Tests like 23andMe are a fad that distracts us from the reality of race in America.

When my sister called me a few months ago to say, a little breathlessly, that she had gotten back her results from 23andMe, I snapped at her, “I don’t want to know!” She kept trying to share, but I kept shutting her down, before saying I had to go and hanging up. Afterward I felt a little shaky, as if I’d narrowly escaped disaster.

I’ve never been interested in DNA tests. I have nothing against people discovering they’re 18 percent German or 79 percent Irish, but I think the tests are a fad that distracts us from the harsh realities of race and identity in America. They encourage us to pretend that in terms of shaping who we really are, individual narratives matter more than the narrative of the country as a whole. There is no test for separation and tribalism, and yet they are baked into our cultural DNA.

But that didn’t explain the panic I felt during that phone call. I was a little embarrassed that I couldn’t take the news, whatever that news turned out to be. And then I realized that was it: I didn’t want to “turn out to be” anything more than what I was. I didn’t want my blackness divvied up or deconstructed any more than it has already been, not just in my lifetime but in the history of the Creole people of Louisiana I descend from…

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Carlos Arias Vivas | DNA tests don’t define your identity

Posted in Articles, Health/Medicine/Genetics, Identity Development/Psychology, Latino Studies, Media Archive, United States on 2018-04-09 02:03Z by Steven

Carlos Arias Vivas | DNA tests don’t define your identity

The Daily Pennsylvanian
Philadelphia, Pennsylvania
2018-03-14

Carlos Arias Vivas


CC0

Convos with Carlos | 23andMe results can’t change your upbringing

During one late night bonding session with my hallmates, one of them revealed to the group that they took a DNA test and discovered more about their background. Intrigued, I sought out to buy one of the kits for myself. The major players in this industry are Ancestry.com and 23andMe; both offer DNA tests that can shed light on your lineage as well as an optional health risks assessment.

Now, I knew that these tests are very expensive. For 23andMe, the basic ancestry service costs $99 and the Health + Ancestry service costs $199. I ended up choosing to go with 23andMe based on positive online reviews. Also, this was the brand my hallmate had used. Luckily, for me, there was a special Black Friday sale, so I snatched up the kit and waited for it to arrive at Amazon@Penn.

Before doing the spit-test that is required, I knew that I was going to be Latino. My parents are from Ecuador, and I imagined that my ancestry composition would show a high concentration of Latino ancestry. I never questioned my background because that was never a conversation I had with my family. After countless times of spitting in my tube, I entered my registration code to track my kit, sealed up the test tube in the box, and dropped off my sample at the post office.

This “waiting game” was an agonizing process. But even though I was excited to receive my results, I knew that the outcome wouldn’t dramatically change who I was. Whatever 23andMe had in store, my upbringing is already set in stone…

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Woman takes 2 ancestry tests, gets 2 wildly different results

Posted in Articles, Health/Medicine/Genetics, Media Archive, United States on 2017-11-07 22:50Z by Steven

Woman takes 2 ancestry tests, gets 2 wildly different results

The Grio
2017-11-03

A Chicago-area woman wanted to test the accuracy of the popular DNA tests that are supposed to find your family history, but when she mailed away her DNA, the results she got were vastly different from each other.

Jennifer Smith was interested in her family ancestry, so she tried out a DNA kit from Ancestry.com, but was shocked when her breakdown showed that she was 97 percent European and 2 percent Asian.

“I’m a Black girl; I am not a Jewish white lady,” Smith told Fox32 Chicago, recalling her utter confusion at her results…

William Gilliland, an associate biology professor at Depaul University, explained that “DNA tests for ethnicity are entertainment value only,” noting that while DNA tests can connect you to family members, there is no solid DNA marker or “diagnostic nucleotide” for race…

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White Nonsense

Posted in Articles, Health/Medicine/Genetics, Media Archive, Social Science, United States on 2016-10-19 00:38Z by Steven

White Nonsense

Vice News
2016-10-09

Elspeth Reeve

Alt-right trolls are arguing over genetic tests they think “prove” their whiteness

Andrew remembers feeling a “tinge of apprehension” when he logged on to 23andMe. Several weeks earlier, he’d spit into a tube and mailed it to the genetic testing company, which analyzes customers’ DNA to estimate where their ancestors came from. But when he clicked on his color-coded ancestry chart, he felt relief: 99.7 percent European. He went to the Reddit page /r/WhiteRights, where he’s a moderator, and posted a screenshot: “Finally got around to checking my privilege,” he wrote. At the bottom of the chart, he’d photoshopped in an extra line: “100% Goy.”

“There’s kind of a running joke that everyone works for the JIDF [Jewish Internet Defense Force] or is secretly nonwhite,” explained Andrew, who says he’s a 31-year-old lawyer from Washington, D.C. “So when I posted my 23andMe results, I was playing off that.” (Andrew posts on Reddit as slippery_people, but, like quite a few of the white nationalists I’ve spoken to, he doesn’t want his real identity associated with these views.)…

…23andMe does not test for race. Its main business now is ancestry testing, after some early trouble with the FDA over claims the service could mine your genes to determine risk factors for disease. The company, based in Mountain View, California, received an investment from Google in 2007, a year after its founding. It got another boost in 2012 when PBS began running “Finding Your Roots,” a show where celebrities traced their ancestry with genotyping from 23andMe. By June 2015, the company had analyzed the DNA of 1 million customers, though it has faced some criticism for not having a large enough sample of DNA from people who do not have European heritage…

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White? Black? A Murky Distinction Grows Still Murkier

Posted in Anthropology, Articles, Health/Medicine/Genetics, History, Latino Studies, Law, Media Archive, Native Americans/First Nation, Slavery, United States on 2014-12-24 17:50Z by Steven

White? Black? A Murky Distinction Grows Still Murkier

The New York Times
2014-12-24

Carl Zimmer

In 1924, the State of Virginia attempted to define what it means to be white.

The state’s Racial Integrity Act, which barred marriages between whites and people of other races, defined whites as people “whose blood is entirely white, having no known, demonstrable or ascertainable admixture of the blood of another race.”

There was just one problem. As originally written, the law would have classified many of Virginia’s most prominent families as not white, because they claimed to be descended from Pocahontas.

So the Virginia legislature revised the act, establishing what came to be known as the “Pocahontas exception.” Virginians could be up to one-sixteenth Native American and still be white in the eyes of the law.

People who were one-sixteenth black, on the other hand, were still black.

In the United States, there is a long tradition of trying to draw sharp lines between ethnic groups, but our ancestry is a fluid and complex matter. In recent years geneticists have been uncovering new evidence about our shared heritage, and last week a team of scientists published the biggest genetic profile of the United States to date, based on a study of 160,000 people…

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Black And White In America: Study Reveals Many Americans Have Mixed Race Background They Were Unaware Of

Posted in Articles, Health/Medicine/Genetics, Media Archive, United States on 2014-12-19 21:40Z by Steven

Black And White In America: Study Reveals Many Americans Have Mixed Race Background They Were Unaware Of

Medical Daily
New York, New York
2014-12-18

Dana Dovey, Health Journalist

Earlier this year, National Geographic made headlines with its “Changing Face of America” article. The story explained that America was becoming more comfortable with interracial relationships, and as a result, the future would be made up of a group of people with features from multiple races. A new study has challenged this hypothesis and suggested that this “mixed race future” is already here. We just never realized it.

The study, published by Cell Press, found that there is quite a large difference in the race that people identify with and what they actually are. In a recent study, researchers analyzed the DNA of more than 160,000 Americans who had offered their saliva as part of the 23andMe project. What researchers found was surprising.

The study found that, as expected, people tended to identify with the race that made up the majority of their background. However, for many, this self-identification was not completely accurate. According to the press release, the team estimated that as many as six million Americans who identify as white from a European background carry African ancestry and as many as five million self-described European white Americans have Native American ancestry….

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