Mixed Race Studies

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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Afro-German Women are Still Upholding the Legacy of May Ayim

Catapult
2020-09-10

Tari Ngangura

May Ayim with Audre Lorde/Photograph via audrelordeberlin.com

There have always been people suffering from anti-Blackness. And May Ayim highlights the continuity of the Black experience—not only her own, but those before her as well.

In 1986, Afro-German author and poet May Opitz—better known as May Ayim—co-edited the anthology, Showing Our Colours: Afro-German Women Speak Out. The book carries the stories of Afro-German women and their volatile, often violent experiences with anti-Blackness, belonging, and sexism in the European nation. Showing Our Colours remains a seminal offering in works that claim the existence and legitimacy of Black history within Europe, and also examines Germany’s specific role in the nineteenth century colonization of Africa—including the genocide in Namibia, which saw over one hundred thousand of the Herero, Nama, and San people killed by the German regime from 1904 until 1908.

Those who survived the genocide were locked in concentration camps, a precursor to those that would be utilized in the Holocaust. Showing Our Colours is as much about claiming space as it is about holding Germany accountable to its imperial history and its effects on the contemporary realities of Black immigrants living in the country. The book also outlines political shifts through the ages that saw terms like Moor, Negro, and African morph into racial epithets that would later be used by pseudoscientists to justify anti-Black racism, fascism, and medical bias.

Ayim died by suicide in 1996, and in her life and death, I see a testament to the resilience of Black women, and an indictment of insidious white supremacy that makes Black life a fragile negotiation between visibility and erasure. Since her death, Ayim’s work has been revisited most often by young Afro-Germans searching for the language and tools to explore their Blackness and womanhood alongside a European history that interrupted their ancestry and systematically destabilizes their present. For Afro-Germans, and especially the youth who have lived through global Black Lives Matter conversations, who witnessed police brutality on both a national and global scale, it is not enough to be simply German. It’s in this space that Ayim’s work is finding new eyes…

I spoke with Marny Garcia Mommertz, a Black-German researcher born in Oldenburg, Lower Saxony, about how the late author’s work has been something of a map, detailing similar experiences of othering, and a reminder that her contemporary reality is not simply of her own making, but part of a larger structural legacy of oppression…

Read the entire interview here.

Because She Can: The Unbearable Whiteness of Jessie

The Crisis
2020-09-09

TaRessa Stovall

I’m a mixed (Black, Jewish, Native American) boomer, very light-skinned and so racially ambiguous looking that most people question, assume and try to challenge my racial identity.

My copper-toned Black father hated that I wouldn’t exploit my appearance to “be anything.” My Russian Jewish mother wondered about my lifelong allegiance to Blackness and my stubborn insistence on conveying the messy totality of my DNA even when it wasn’t comfortable, advantageous or convenient.

Still, I never lied about my identity. Even when doing so might have made my life easier.

We’re familiar with the reasons that many Black people passed for white, especially in the Reconstruction and Jim Crow eras — as a way to lessen oppression and “level up” to better opportunities. But why would a white person discard their privilege to pretend to be Black?…

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As 2020 census winds up, multiracial Hoosiers reflect on 20 years of being counted

The Herald Bulletin
Anderson, Indiana
2020-09-12

Rebecca R. Bibbs

Brooke Watson plays catch with her daughters, Heaven, 11, and Angel, 14, in the front yard, above, and holds up a plant for her daughter, Heaven, 11, to water, below, at their north Anderson home. Parents of mixed-race people approach the subject of race in different ways. Some raise their children to ignore race as their personal effort to guide the nation toward a post-racial society; others cultivate their children’s multiracial identities, telling them they are the bridge between the races. Watson said her parents did the former. Photos by John P. Cleary | The Herald Bulletin

INDIANAPOLIS – Gerry Lanosga, whose mother is Dutch/German and father is Filipino and Nicaraguan, doesn’t quite remember which box he checked when he completed the 1990 census.

Though he thinks of himself as multiracial/multiethnic, the associate professor of journalism history and investigative reporting at The Media School at Indiana University in Bloomington does recall there really was no way at the time for him to reflect that.

So, against his real feelings regarding his racial and ethnic identity, Lanosga said, he likely reported to the U.S. government that he was white. It fit more closely with how he believes his family lived, but it was not a satisfying response to the question, he said.

“I do think given my particular mix of things, when people talk about whiteness, that’s me, but that’s also not me in some ways,” Lanosga explained.

The U.S. Office of Management and Budget, which oversees the census, made things a little easier for people like Lanosga in late 1997 when it decided multiracial people would be allowed to check more than one race on the 2000 census…

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Passing Revisited: Racial Passing and White Supremacy

Medium
2020-09-04

Jennifer Rittner

In the wake of the white supremacist marches in 2017, I wrote a short reflection on racial passing. In that essay I wrote about my Black mother, my white son, and the absurd mythologies of racial purity needed by white supremacists to support their beliefs. Those marchers surely counted among them many who had direct African American heritage as a result of near ancestors who had passed for white in the inhospitable environments of legal slavery and Jim Crow.

The White Supremacy of Masquerading as Black

White supremacy rears its head again in another form of passing, as men and women who have grown up as white children in white families have taken to masquerading as Black adults in order to achieve personal success as race warriors. Jessica Krug and Rachel Dolezal, two sisters-in-deceit, both manipulated their ways to success by passing as a Black woman, and in the process, denying actual women of color the opportunities they took for themselves. Their behavior should cause us to reflect on our United States of Racial Anxiety as we are all, in fact, oppressed by our nation’s historical, collective weaponization of race. While adamantly censuring both of these women, we can use their deceptions as opportunities to reflect on how the social conditions we construct and perpetuate demand certain forms of racial authenticity, often built on the anxieties we all feel about passing as something.

First, two resources for anyone interested in the history of passing:

Allyson Hobbs, A Chosen Exile: A History of Racial Passing in American Life is a well-researched and beautiful read on the topic. James Baldwin, Another Country was one of the first books in which I felt seen around the question of passing as a social act…

Read the entire article here.