NPR, as part of their series about discrimination in America, talked about how it is difficult to obtain a diverse research sample when your diverse research sample doesn't trust scientists.
This story by Rob Stein is about public outreach attempts in order to gather a representative sample for a large scale genetic research study. The story is also about how historical occurrences of research violations live on in the memory of the affected communities.
The National Institutes for Health is trying to collect a robust, diverse sampling of Americans as part of the All of Us initiative. NIH wants to build a giant, representative database of Americans and information about their health and genetics.
As of the air date for this story, African Americans were underepresented in the sample, and the reason behind this is historical. Due to terrible violation of African American research participant rights (Tuskeegee, Henrietta Lacks), many African Americans are unwilling to participate in research that involves a genetic sample. Many people are also weary of provided a genetic sample due to a lack of trust in the government or/and police.
How to use in class:
-It demonstrates some of the modern day ramification of the ethical violations against Henrietta Lacks and the Tuskegee Experiment.
-WEIRD data problem and attempts to over come these problems by reaching out to underrepresented groups.
-I think it also worth noting that a lot of anti-science, anti-medicine fears are born out of big historical incidents, not necessarily hysteria or bad information.
-Statistics aren't just math. Statistics are as good as your research sample. If their are barriers to collecting a representative sample, researchers must be sensitive to these barriers and work to overcome them.
-Cross-cultural research isn't good just because we have a hazy idea that diversity is good...it is good because humanity is very, very diverse and a thorough understanding of that diversity requires cross-cultural research.
This story by Rob Stein is about public outreach attempts in order to gather a representative sample for a large scale genetic research study. The story is also about how historical occurrences of research violations live on in the memory of the affected communities.
The National Institutes for Health is trying to collect a robust, diverse sampling of Americans as part of the All of Us initiative. NIH wants to build a giant, representative database of Americans and information about their health and genetics.
As of the air date for this story, African Americans were underepresented in the sample, and the reason behind this is historical. Due to terrible violation of African American research participant rights (Tuskeegee, Henrietta Lacks), many African Americans are unwilling to participate in research that involves a genetic sample. Many people are also weary of provided a genetic sample due to a lack of trust in the government or/and police.
How to use in class:
-It demonstrates some of the modern day ramification of the ethical violations against Henrietta Lacks and the Tuskegee Experiment.
-WEIRD data problem and attempts to over come these problems by reaching out to underrepresented groups.
-I think it also worth noting that a lot of anti-science, anti-medicine fears are born out of big historical incidents, not necessarily hysteria or bad information.
-Statistics aren't just math. Statistics are as good as your research sample. If their are barriers to collecting a representative sample, researchers must be sensitive to these barriers and work to overcome them.
-Cross-cultural research isn't good just because we have a hazy idea that diversity is good...it is good because humanity is very, very diverse and a thorough understanding of that diversity requires cross-cultural research.