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Short Wave

A Call For Equity In Genomics Research

Short Wave

NPR

Daily News, Nature, Life Sciences, Astronomy, Science, News

4.76K Ratings

🗓️ 12 November 2020

⏱️ 15 minutes

🧾️ Download transcript

Summary

In the future, genomic research could lead to new treatments for human disease. It turns the data in our DNA into a global commodity. But historically, minoritized communities have been left out of this research. Keolu Fox is a genome scientist trying to change that and advocate for a more equitable approach when Indigenous and other underrepresented communities do participate.

Read Keolu's paper, "The Illusion of Inclusion", in the New England Journal of Medicine.

Reach the show by emailing us at [email protected].

Transcript

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0:00.0

You're listening to shortwave from NPR.

0:06.8

When you think of resources on Earth, what do you think of?

0:13.0

Maybe you think about water or oil, timber perhaps.

0:19.4

What about data?

0:21.4

Our data, the information stored in our DNA.

0:25.1

Genome sequence data itself can be used and aggregated as a resource.

0:29.6

In that sense, it's no different than diamond mining, coal mining.

0:35.8

Like it is a resource, and in fact, we should start treating it as such and recognize its

0:40.4

value.

0:41.4

That's Kaleu Fox.

0:43.1

He's a professor at the University of California San Diego and a genome scientist.

0:48.5

I mean, I've been thinking about diversity and genetic variation for pretty much my whole

0:56.0

life as a Hawaiian person.

0:58.7

My Ohanna, my family, is from the big island of Hawaii, and this is a place that has just

1:05.3

tremendous biological diversity.

1:08.1

Over the years, Kaleu's worked on projects gathering and comparing DNA sequences, often

1:14.6

in hopes of finding a genetic cause of a disease or even developing a treatment.

1:20.5

But early on in his career, he noticed this research left a lot of people out.

1:27.6

Like the one time he realized none of the participants in a study were Polynesian.

1:32.8

And that made me extremely upset.

1:35.6

It was like the boat had left for the future of predictive and preventative medicine, and

1:41.5

my people weren't included on the boat.

...

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