On April 24, 2003, shortly after the completion of the human genome project, its director Francis Collins and his team posed
15 grand challenges to the scientific community. They dared researchers
to harness the genome to crack puzzles of biology, health, and society.
In particular, they called for genome-based tools to close health
disparities. Since then, the United States has pumped more than $1 billion a year into genomics research. What do we have to show for it?
“What we found in the literature published from 2007 to 2013 was
basically nothing,” said Jay Kaufman, the lead author of the first study
to examine available genetic data for evidence that explains a major
racial-health disparity. For many years, researchers speculated that
what they couldn’t explain about disparities must be the fingerprint of
some mysterious genetic component.
But since they are now able to scan the entire genome, this speculation
appears both lazy and wrong. When it comes to why many black people die
earlier than white people in the U.S., Kaufman and his colleagues show
we’ve been looking for answers in the wrong places: We shouldn’t be
looking in the twists of the double helix, but the grinding inequality
of the environment.
It is no secret that a longer life is a white privilege in the U.S.
In 2011, the Centers for Disease Control and Prevention (CDC) reported
that white men lived more than four years longer than black men, and
white women lived more than three years longer than black women. The
main reason for the racial mortality gap is heart disease.
“There’s a huge number of years of life lost because some people have
the black life expectancy and not the white life expectancy,” Kaufman
said. “It’s killing people prematurely on the basis of race.”
Why hasn’t attention turned, then, to social inequality, not
genetics, as the source of health disparities? The main reason is the
political ramification. “If you show that this is a predisposition that
is genetically determined—black people just have this gene, there’s nothing we can do about it, this is just nature—then
society is completely absolved. We don’t have any responsibility to
solve this problem,” Kaufman said. “If you show that it is because of
racism and injustice and people’s living conditions, well, then, there
is some responsibility and we have to do something about this.”
In his book Making the Mexican Diabetic: Race, Science, and Inequality,
Michael Montoya shows how epidemiologists try to explain diabetes
through genetics, even if evidence points in a social direction:
lifestyle disruptions, dispossession, and poverty, which
disproportionately affect minorities. “It is much easier to say it must
be something [wrong] with those people than it is [to say something’s wrong] with the way we have arranged our society,” Montoya told me.