Op-Ed by Emma Johnson
Midland Daily News, 4 Sept 2019.
https://www.ourmidland.com/opinion/voices/article/This-is-one-deportation-America-must-stop-14408759.php
FULL TEXT:
Isabel Bueso came to the U.S. from Guatemala to participate in a
rare-disease study at UCSF and now has 33 days to leave the country;
but, in Guatemala, they don’t offer the intravenous infusions that keep
her alive.
The Trump administration’ U.S. Citizenship and
Immigration Services is deporting children who are receiving life-saving
medical care in the U.S. due to a deferred action policy. While all
cases are egregious, Bueso’s situation stands out as especially
disturbing.
At an internship at Michigan Technological University
that involved analyzing human blood, I had to pass two tests before
conducting any research using human subjects. One was on safety and the
other concerned ethical guidelines by the Institutional Review Board
(IRB).
In the scientific community, it is against the rules to conduct testing on populations that will not benefit from the research.
That’s why there cannot be testing on prisoners, the homeless, or
people in third-world countries. The only exception is for diseases that
have a higher prevalence within a population and the cure will benefit
that population.
This rule is to avoid past unfortunate cases such as:
1. Studying the effects of syphilis on African Americans in the South without treating them and lying about it.
2. Doing studies that could have deleterious outcomes on
vulnerable populations that are desperate for money, such as prisoners
and the homeless.
3. Going to third-world countries to test on their
populations, only to let participants die because they can’t afford the
life-saving medicine they helped develop.
4. An African-American woman Henrietta Lacks unknowingly
“donating” her cancer cells and then not receiving treatments based on
research employing her cells.
The United States government and the scientific community
deemed that using the bodies of vulnerable populations only to let them
suffer and die, while an affluent mostly-white population reaped the
benefits, was ethically wrong.
Today, we have another case violating this code of
ethics. Bueso was part of the solution to finding a life-saving
treatment for MPS-6, an enzyme disorder that inhibits cells from
processing sugars and now she faces being cut off from treatment.
To use her body, deport her, deny her treatment, and then
save the lives of affluent white babies who haven’t yet been born will
be a shameful mark on our country’s history if this deportation goes
forward.
Emma C. Johnson is a writer and a Midland resident.
-->
