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Rachel Chen

Mr. Gilbert
Social Justice, period 2
11 April 2016
People Who Avoided Illness Could Be Key in Treating Those Who Didnt
According to this article, there are thirteen individuals in the world who possess a
particular gene that causes a fatal or terribly debilitating disease in infancy or childhood - but
these people are adults, and healthy. Dr. Stephen Friend, the leader of the research that seeks to
harness the genetic power of the thirteen individuals, is frustrated because generally, when
people input their genetic sequences in the National Human Genome Research Institutes
database, individuals remain anonymous. Dr. Friends work involves using biotechnology to fix
genetic defects that cause disease and disorders, and his current research involves seeking out
healthy individuals who possess a debilitating gene, but were never affected by it. However, this
research is seemingly impossible because healthy people have no reason to be screened for this
particular research purpose, and screening all healthy people to search for ones who posses an
invisible gene is completely infeasible. Healthy people would have no idea that they possess
the gene in the first place, and they wouldnt be involved in the study in the first place. Three
years ago, Dr. Friend and his colleague, Dr. Schadt, searched public international databases, case
studies, and cross-referenced genes of individuals and found thirteen individuals with the desired
gene. The article didnt elaborate on Dr. Friends study past the search of individuals, since he
faces challenges that modern science cannot overcome yet.
This article relates to social justice because it involves issues of medical advancements,
personal information in public databases, and genetic fixing. In terms of medical advancements,
instead of identifying a gene and finding a subsequent cure, Dr. Friend decided to take an
alternate approach, finding a gene with reversal effects on the diseases that affect the body.
However, to conduct his studies, he and his partner had to search over 15,000 peoples data for
possible gene resilience, which technically isnt illegal because they belong to public databases,
but may cross the line of intrusiveness of . Another overarching issue that undercuts this article
is the controversial idea of gene-fixing. There are several perspectives regarding the issue,
depending on whether or not one values gene authenticity or mutated genetic prevalence.

In my opinion, any medical advancement in the field of genetic fixing is beneficial to the
human race; however, if in the process of research personal information is exploited, the medical
advancement would be fraudulent and not worth it. Personal privacy is more important than the
importance of medicine and modifying the human genome, so it must be respected. In terms of
genetic modification as an issue in itself, in my opinion, is a moral right of humanity to pursue,
since it will benefit people with previously incurable disease and disorder.

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