The GuardianThe Guardian

The human genome needs updating. But how do we make it fair?

By Ida Emilie Steinmark

29 Jan 2023 · 7 min read

Editor's Note

The standard genome used in healthcare is based on one American. The Guardian explains that as we enter an era of personalized medicine, this bias will have drawbacks for many worldwide.

In June 2000, Bill Clinton, the then US president, stood smilingly next to the leaders of the Human Genome Project. “In genetic terms, all human beings, regardless of race, are more than 99.9% the same,” he declared. That was the message when the first draft of the human genome sequence was revealed at the White House.

The single string of As, Ts, Cs and Gs eventually became the first human reference genome. Since its publication in 2003, the reference has revolutionised genome sequencing and helped scientists find thousands of disease-causing mutations. Yet at its core is a somewhat ironic problem: the code meant to represent the human species is mostly based on just one man from Buffalo, New York.

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