Johnson: This is one deportation America must stop

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.
-->