The Ethics of Collecting Genetic Data From Indigenous People

What is this about?

This case is about the publication of the analyses of the DNA from 4 men in Namibia, which occured in 2009, and the consequenses of that publication. This is a factual case.

Key quote:

"Without studies that look at each underrepresented population, genetic tests and therapies can’t be tailored to everyone. Still, (...) collecting that data could exploit the very people the programs intend to help."

The core ethical problems include:

Respect: treating ethnicities as mere objects of scientific and/or commercial interest.
Consent: 1) A genome belongs to a whole population, not just to an individual, so obtaining individual consent for DNA analysis may not be sufficient and 2) Collected data may be reused for purposes which were not originally consented to.

Why is this important?

Historically, participants in genetic studies predominantly had European ancestry. To better understand how different groups have different medical challenges, it is important to chart the genomes of ethnic groups worldwide. Yet, the way in which this is done poses ethical challenges. ^[1]