Questions for ‘By not including everyone, genome science has blind spots’

illustration of a woman walking across of a bridge of DNA

A lack of diversity in genetic databases is making precision medicine less effective for many people.

Delphine Lee

To accompanyBy not including everyone, genome science has blind spots


Before Reading:

1.  What is DNA? Where is it found? What does it do?

2.  What is DNA sequencing? Do you know anyone who has had their DNA sequenced? What did they find out?

During Reading:

1.  What is precision medicine?

2.  Many people go to their doctor to have their DNA tested. Why might that person be left with more questions than answers if they are not white?

3.  Why might doctors assume that Black women need to consume more calcium than their body may actually need?

4.  What is the human reference genome?

5.  Any two people are about 99.9 percent genetically similar. Why is it important to know about the 0.1 percent difference between them?

6.  According to Sam Oh, what might explain why most people who participate in GWAS studies are white?

7.  Why does Constance Hilliard argue that the best way to increase diversity in genetic research is to include more people from Africa?

8.  What happened in the infamous Tuskegee experiment?

9.  Why does Keolu Fox argue that improving infrastructure and access to health care is more important than improving precision medicine?

10.  Why does Krystal Tsosie say that a member of a small group such as a Native American tribal nation or the Amish should not participate in a genetic project without having first discussed the decision with their community?

After Reading:

1.  This story proposes several ways to improve diversity within genetic studies. Which do you think would be the most effective? Use evidence from the story to explain your answer.

2.  One concern about efforts to boost diversity in genetic studies is that pointing out genetic differences may reinforce old concepts of racial inferiority and superiority. With a partner, brainstorm several ways to address those concerns.