The Ancestry Trap: This Geneticist Wants to Shift the Focus From DNA Testing to Black Futures

– One of the most ironic
things is that I’m a geneticist and I’ve actually never
done a genetic test. I’m Dr. Janina Jeff and this is a word about the complicated relationship between black people and
genetic ancestry testing. I became interested in science as a very young girl in New Orleans. I used to do science fairs, and then I started winning them. After I finished my college
degree at Spelman College, I went on to Vanderbilt
and did some rotations and knew that I wanted
to be in human genetics. And so, when I got to Vanderbilt, I got a PhD in human genetics, and, fun fact, I’m the
first African-American to receive a PhD in human
genetics from Vanderbilt. So, I think we should
start with what DNA is, and DNA is a molecule that
is found in your genes. And so, DNA consists of four letters, A, T, C and G, and these four letters in
certain combinations in sequence make up genes. Genes are like an instruction manual, and genes give your body
all of the instructions that it needs to survive. And in addition to those, there’s a small percentage
that makes us different. So, when one person might have an A, you might have a C at that location. And if you have a C at that location, you might have a different
physical representation, or what we call a phenotype. So, the four letters that I
talked about, A, T, C, and G, they can change. And when they change,
they’re usually changing to help your body survive or
to help a population survive. The first modern human
evolved out of Africa. So, because our genomes are
the descendants of ancestors that were thousands and
thousands in years ago, we have a lot of
information in our genomes about how the body has evolved from generation to generation. Direct-to-consumer tests are any tests that any person can order
without a physician. And some of the direct-to-consumer tests you might be familiar with is 23andMe,, Family
Tree DNA, MyHeritage DNA, African Ancestry, AfroRoots. So, you send in your DNA, and they compare your DNA with other DNA samples that
they have in their database, something that we call a reference. And that reference might
represent a common ancestor you may have, let’s say,
in Africa or in Europe. Now, as you would imagine, if the database is
limited in representation, what you get back is the next best match, which may or may not be
an actual representation of your genome or your genetic ancestry. Companies are now increasingly
updating their results, and that’s a very positive thing. That means that they’re working
to improve their database and their methods so that
you get accurate results. I like to tell everyone
to not get too attached to the genetic ancestry results as they’re gonna be dynamic,
constantly changing, and we should be embracing
all of our common ancestors and not try to just be tied to one story. One thing that’s
extremely disturbing to me is that a lot of these companies are marketing towards
non-European populations, and specifically
African-descended populations. And in some cases, they’re marketing a
fairytale about our past. – Abigail, we can escape. – And they’re not being very considerate of how a black woman, specifically, might engage with her
genetic ancestry tests. We know the history of slavery. We know the history of our fair skin or that European ancestry
that lives within us, and it’s not a very positive thing. This is a result of rape most times. To market us in a way
that this is a fairy tale, that having European ancestry
is something positive, directly goes into white supremacy. While these companies
are all well-intended and they wanna do really positive things, transparency is a big key in getting African
descendants to participate. Transparency around privacy. So, how will my data be used? Will you give access to
your database to the FBI or any other government official? I’ve gotten a free test years
and years and years ago. And I learned that anything that’s given away to you for free, is not actually free, that means you’re the product. And I don’t think it’s
clear to a lot of people that you’re paying to
get your genetic results, but then they’re selling your data. And I think a lot of people would feel a little differently about that. Do you wanna sell your data? Do you feel like you should get a profit from the selling of your data? I want everyone to be their
own shareholder of their DNA. There are a lot of things
that have happened in research that have kind of caused this
distrust in our community. One of the most famous is Henrietta Lacks. Henrietta Lacks was a black
woman who had cervical cancer, and she went in to get treated
at John Hopkins Hospital, and the physician extracted cells from her and saw that these cells
continued to replicate. What he did is, he
continued to use those cells in his cancer research, and her cells are being used in every present-day research cell biology lab. Henrietta did not consent
for the use of her cells to be used in research. Furthermore, there’s a financial gain to being able to use
those cells in these labs, and there is a lot of
money that’s being made. How is that money now
trickling down to Henrietta and her family or the
black community at large? I like to believe, though, while a lot of research
has been unethical, we do have power within our genome. We have to remember the control
we have in sharing our data. And I don’t ever say, “No one
should take a genetic test,” I actually feel quite the opposite. We all should be engaging
in genomics research when we know everything
about what can happen. And the more we start to
learn about our genomes and embrace the value
that within our genomes, we might be able to use it as a tool for generational wealth. Since we know that value
and since companies are using that value to sell that DNA, we might be able to do that on our own. I wanna see that black
futures be prioritized. Talk to me about diseases and illness that are impacting black
people specifically, and I would be much more
engaged to wanna help. Because, really, if I can
give my genomes to a company and I know that their
intentions are to help generations behind me, then I feel like I’m doing something good, not only for myself, but for the relatives that I might not ever meet. We should be marketing
towards the way the genome holds promise to our futures. (gentle instrumental music)


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