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Season 1 - Foundations
Episode 13 - Know Your Resources: Genetics, Genealogy & the Language of DNA (Part 1)
When tracing your ancestry, it’s important to know your resources, especially when we are talking about genetic history. It’s important to know what options you have and how to assess them once identified. To help us in this quest, we will have two guests discuss 1) the fundamentals of genetic testing and 2) the components of genetic genealogy.
Our two guests are Dr. Janina Jeff, and Shannon Christmas. Dr. Jeff is going to be incredibly helpful when thinking about the issues raised in this episode. She is a geneti-SIS and my Spelman Sis, who was the first Black American to graduate from Vanderbilt University with a PhD in human genetics. She also started a podcast called In Those Genes to discuss genetics in the context of black culture. If you haven’t listened to last week’s episode where I showcase Season 1 Episode 1 her show (Scientific Sankofa) – check it out now. I promise you’ll enjoy and it will provide a deeper context to today’s conversation. See full bio below.
We also have the pleasure of hearing from Shannon Christmas, a genetic genealogist whose interest in genetic history began as a personal endeavor and grew into a skill that he provides others looking into their own origins. See full bio below.
Black People & Medical Mistrust
How do we learn about our genetic history? we use direct-to-consumer testing like Ancestry.com, 23andME, and more. Direct to consumer genetic testing has become quite popular in the last decade. Particularly, people have used this testing to determine “where they come from” meaning the geographical locations that their ancestors can be traced to. But this is complicated for black folks.
Traumatic Lineage
For one thing, many of us know that we have African ancestry. And if you’re up to date on the podcast – you know the data makes it quite clear that on average, the remaining ancestry, comes from Europe – and can be traced to a time period in the U.S. where those of European descent owned and brutally violated by black people. As a result, much of mixtures are tied to sexual violence & abuse. So, confirming that information in a genetic test, isn’t on the top of many to-do lists.
Black Women & Gynecological Practice
First, we’ll go back to slavery – of course – to consider one of the earliest documented examples of medical science abusing black people: the creation of modern gynecology.
James Marion Sims is known as the “father of gynecology” though his treatment of black women was far from paternal. In the 1800s, Sims “fell into the practice.” It wasn’t his first choice to focus on women’s health, because in this time period his white male peers rarely treated women and found it to be distasteful. But soon, Sims became well-known for his creation of the speculum and other related surgical techniques to treat complications from childbirth.
How did Sims rise to prominence in a field hardly respected? Well, he practiced on black bodies. Sims exposed black women – both literally & figuratively – to intense trauma. Those he experimented on were enslaved and during his procedures he would force them to remove all clothing, position them on all fours, and made them endure the painful treatments while their enslavers watched.
One of them, Anarcha, was a 17-year-old enslaved girl who received 30 operations by Sims. Another, named Lucy, “endured an hour-long surgery” while she screamed and cried out in pain, as nearly a dozen doctors watched. And a third known victim of his practice, was an enslaved woman named Betsey. We know their names, but we lack records of the many more women who helped Sims shape gynecology...without compensation, recognition, consent, or even anesthesia.
And to be clear, his practice was not separate from but in fact rooted in the slave trade. Enslavers would turn to Sims to get the women back in “sound” or breed-able condition.
Sims is still honored in the medical community. And for black women, even without knowing the history of Sims’ & gynecology, it is a community that continues to disregard their well-being. Current data shows that black women are 3 to 4 times more likely to experience pregnancy-related death than their white counterparts, even when comparing women with similar income & education.
Countless black women have horror stories of near-death experiences where they expressed pain and were simply ignored by their medical providers. Other women cannot share their experiences because the impact of the negligence was fatal. This disparity is appalling on its own, but when considering it in the context that black women's bodies were used to progress the field of gynecology, it's downright shameful.
Tuskegee Syphilis Experiment
In 1939, 600 black men were placed into a research project conducted by the Public Health Service – a division of the US Department of Health & Human Services. The project was called, the “Tuskegee study of Untreated Syphilis in the Negro male.” There were 399 participants who had syphilis and 201 who did not. BUT the patients did not give informed consent. In other words, the patients did not know what the study was about when they agreed to be in it. They were misled to believe that they were being treated for “bad blood” a local term for people with many ailments including anemia, fatigue, and sometimes syphilis. In this study, they never received treatment for syphilis or any other issue. As the study title suggests, the disease was left untreated.
How did researchers persuade black participants to join? They offered free medical exams, meals, and burial insurance. They were told the study would last 6 months but instead it went on for FORTY YEARS. Even when penicillin became the drug of choice for syphilis in 1947, almost ten years after the study began, researchers did not prescribe it to the study subjects!
A panel was formed to review the study and found that not only were the men lied to and not given treatment, but they were never given the choice to quit the study. The panel of lawyers, doctors, religious & education figures, and health administrators found that the study was “ethically unjustified.” The knowledge obtained was far lower than the risk caused to patients – although I question what level of reward would be worth the risk that these men suffered.
When left untreated, syphilis can have devastating impact on the human body including damage to the brain, nervous system, eyes, heart, liver, bones and joints.
And these men were left untreated & uninformed - by a federal agency.
Fortunately, a settlement was out of court made after a class-action was filed on behalf of study participants granting $10 million and a promise from the US government to give lifetime medical benefits and burial services to all living participants. Later, wives, widows and offspring were added to the program. Because think about it – some of the participants died from untreated syphilis, some likely passed it on to their sexual partners, and most left behind widows, fatherless children, and/or infected loved ones.
The last study participant died in 2004 and the last widow died in 2009. There are 11 offspring currently receiving benefits from the settlement. The impact of this betrayal lives on.
The Erasure of Henrietta Lacks
And the most relevant to DNA testing of these examples is the story of Henrietta Lacks. In 1951, a young black mother named Henrietta Lacks visited Johns Hopkins. She complained of vaginal bleeding. A renowned white male gynecologist, Howard Jones, examined Lacks and discovered that she had a large malignant tumor on her cervix.
The records indicate that Lacks received treatments for her cancer; the best available at the time. But it is not her treatment that puts her on this list of notorious mistreatment of black people. Instead, it is what happened after her treatment.
During her care, a biopsy was taken and sent to Dr. George Gey’s tissue lab. Dr. Gey as also a prominent researcher of this time and had been collecting cells from all patients who came to The Johns Hopkins hospital. From his analysis, he would learn that Lacks’ cells were quite remarkable. Where other cells would die – Henrietta Lack’s cells would double, every 20 to 24 hours! Not only did the cells not die but they could grow indefinitely.
These cells would be named after this special patient and are now known as HeLa cells – the first two letters of her first and last name. They are used in modern medicine to study the effects of toxins, drugs, hormones & vises. They are used to study the effects of radiations and poisons, to study the human genome, to learn how viruses work. They even played a role in the development of the polio vaccine.
You might be asking yourself “what's the problem?” Her cells were used to advance science. The issue here is that Lacks never consented that her cells be removed. She was never informed that doctors like Gey were analyzing her cells at all. She simply thought she was being examined for her cancer. In this day and age, when so many are concerned with privacy rights and consent, we should be able to empathize with the misconduct inherent in taking pieces of someone’s body without informing them.
Given the terminal nature of her diagnosis, Lacks died in October of 1951 at the age of 31. She was never told that within her she carried miraculous-like cells. Indeed, Henrietta Lack’s cells were one of the most important things to happen to the medical field in the last century or so, and until recently, she was not even named as a part of that process. Another black woman erased.
But moreover, after her death, researchers began to study her children, conducting research on them without telling what the research would actually be used for. They were told that they were being test to see if they had the same cancer that killed their mother, but instead they were being tested to learn more about the Lacks’ genetics. Again, deriving scientific information without informed consent.
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Our experts discuss more considerations when determining whether to take direct-to-consumer genetic testing. But the purpose of this episode is not to dissuade listeners from taking DNA tests. I took one and encouraged my family to be tested as well so that we could learn about our genetic history. Instead, my main objective is to contribute to the mission of educating black people and others on the dangers, mechanics & usages of genetic testing.
Listen on Spotify, Apple Podcast, Google Play and more, to hear from Dr. Jeff and Shannon Christmas on resources you can use to trace your American Origin Stories.
Stay tuned for Part 2 of this episode airing next week, where we will learn what makes African genes unique and what to consider when using our DNA results to build out family trees
Guest Bios:
Dr. Janina Jeff - Geneti-SIS & Podcast Host of In Those Genes
Dr. Janina M. Jeff is a STEAM-activist, educator, motivational speaker, and podcaster. She is also the first African American to graduate with a PhD in Human Genetics from Vanderbilt University.
Dr. Jeff has a unique perspective to offer in the world of Human Genetics. While revering the power of the genome and its infinite possibilities, Dr. Jeff has never participated in consumer genetic testing. As an African-American woman, Dr. Jeff is conscious of the lack of ethical research and compassion for African descendant communities. Dr. Jeff’s mission is to inspire a MINDSHIFT to AFRO-futurism through the power of the genome and its ability to predict and mitigate detrimental health outcomes.
Check out her podcast In Those Genes, her Tedx Talk, her 2019 and 2020 features in The Root, and her LinkedIn for more information!
Shannon Christmas - Genetic genealogist
Shannon Christmas, is an experienced genealogist specializing in genetic, colonial American, and African-American genealogy in Virginia and the Carolinas. He serves as a 23andMe Ancestry Ambassador, administrator of The Captain Thomas Graves of Jamestown Autosomal DNA Project, and as a co-administrator of The Hemings-Jefferson-Wayles-Eppes Autosomal DNA Project. Shannon has a special interest in harnessing the power of autosomal DNA to verify and extend pedigrees, assess the veracity of oral history, and reconstruct ancestral genomes.
Routinely invited to lecture at international genealogy conferences, Shannon was one of a select few genetic genealogists invited to participate in the American Society of Human Genetics’ Roundtable on Genetic Ancestry Inference. Shannon was tapped to investigate the genetic lineage of Governor Lawrence Douglas Wilder of Virginia and presented his findings at The 2015 Afro-American Genealogical and Historical Society’s National Conference in Richmond, Virginia.
A trained urban planning and real estate consultant, Shannon has a Bachelor of Arts in Government from Harvard University and a Masters in City Planning from the Massachusetts Institute of Technology.
Named an “essential blog for genetic genealogy education” by the Board of Certification for Genealogists. His blog, Through The Trees, is created for genealogy enthusiasts seeking to locate and leverage new tools and emerging technologies to break through genealogical brick walls.
Learn more at Through The Trees & follow him on Twitter.
Music
All music comes from Storyblocks. Today’s episode featured the following songs:
o Genome project
o Hums
o Funky science
Resources:
The 'Father of Modern Gynecology' Performed Shocking Experiments on Slaves
US Public Health Service Syphilis Study at Tuskegee, CDC (Last Reviewed, March 2, 2020).
The Legacy of Henrietta Lacks, Johns Hopkins Medicine
Henrietta Lacks: A Donor’s Immortal Legacy
Ancestry.com Apoligies for Ad Showing Slavery-Era Interracial Couple
Certificate of Ancestry, AfrianAncestry.com Shop
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