Villar, Carl Francis M.

October 19, 2016

2014-66247 STS 10

Ethical Evaluation of the Jesse Gelsinger Case

Jesse Gelsinger was a teenage boy who suffered from ornithine transcarboxylase
deficiency which increased the amount of ammonia in his blood. What is controversial
about the Jesse Gelsingers case is its failure to treat Gelsinger himself, which therefore
lead to his imminent death due to high fever, multiple organ failure and eventually
incapability of being supported by the life support. However, what is more controversial
is the unethical issues found in this case that lead to the unfortunate events, which
could have been avoided if proper ethics were taken into account.

For individual issues, Gelsinger was not the one who came to the researchers,
but it was the researches who approached him directly to ask for his inclusion in their
medical test. Not only this, but Gelsingers parents were also convinced by the
researchers to proceed with this procedure, so even at the individual level it was already
unethical because the one being subjected should not be coerced into participating a
trial but should readily volunteer himself and have autonomy in his decisions.

For legal issues, there was malpractice with what was done to his procedure. At
the very onset, a minimal 1% of the inserted genes actually reached the targeted liver
cells. In addition, instead of the virus being inserted into a distal blood vessel in order to
lessen the harsh effects on the liver, the practitioner put it inside the hepatic artery
directly, straining Gelsingers liver.This means that it was ineffective in doing so and so
the procedure was not thoroughly researched by its proponents, thereby being
considered a malpractice. Not only this but the extremely high doses of adenovirus were
also detrimental to Gelsinger since it boosted his immune system, which probably
contributed to the high fever that became a factor in his death. This can also be
classified under the adverse effects that were not foreseen from this research.

For social issues, if Gelsinger were to be compared to other patients, the same
procedure also had adverse effects on the liver for these people and were not even
reported to Gelsinger himself. And so, this entire research in itself about a gene therapy
program to replace a defective gene is already a risk to community, since there is a
false hope created by this so-called treatment.

Lastly, for the moral issues since this entire treatment was originally used for kids
then it was morally wrong for the researchers to try it first hand on an adolescent without
further knowledge about its effects on older subjects. Also, the idea of playing god also
comes into concept with gene therapy since in this procedure the original gene is being
replaced by a new one, which to some can still be seen as taboo and against the
Biblical teachings.