St.

Anthony’s College
General Education Curriculum
San Angel, San Jose, 5700 Antique

Ethics and Tough Moral Issues

A Position Paper
Presented to
Theodore Francis Calantas
(Instructor)

In Partial Fulfillment
Of the Requirements for the GEC 108
(Ethics)

By
Jessie Jade S. Duroja
BSCE 2

January 29, 2021

 Fanconi Anemia is a rare disease passed down through families (inherited) that mainly
affects the bone marrow. It is due to an abnormal gene that damages cells, which keeps them
from repairing damaged DNA. According to HOA, Hematology-Oncology Associates of CNY,
because Fanconi Anemia has many of the same signs and symptoms as other diseases, only
genetic testing can confirm its diagnosis. Genetic testing is a type of medical test that identifies
changes in chromosomes, genes, or proteins where the results of a genetic test can confirm or
rule out a suspected genetic condition or help determine a person's chance of developing or
passing on a genetic disorder.
I was amazed when I read the article about the story of Jack and Lisa Nash as they
made history when they used genetic testing to save the life of their six-year-old daughter. But
despite what they did, it bothered me a little about the situation that they produce another child
without a particular disease to save the life of their daughter. In my opinion, I think it is not a
right to produce a child to save the life or health of someone else for many things could happen
to the child especially when it talks about difficult to cure diseases unless they will use the child
without harming them and still live in this world. Ethics has the very important role in this kind
of situation and can help with these challenges. Ethics will be used for the legal decisions to be
used if they will be given a consent to proceed on the use of the child for the genetic testing or
not.

There is an article that I have read which is closely related to the story of Jack and Lisa
Nash but on a different disease. The article is about the daughter of Michelle and Jayson
Whitaker, Charlie who is suffering from Diamond–Blackfan anaemia, a rare condition that
requires painful treatment. Charlie requires blood transfusions and painful daily injections to
keep him alive. The only cure is a transplant of stem cells that are a perfect tissue match. The
Whitakers had a one in four chance of naturally conceiving a child who would be a match for
their sick child but that could be increased to around 98% with PGD and tissue typing. After
Michelle conceived a baby named Jamie, some re-ignited debate about babies created to help
their sick siblings. According to the father of Charlie and Jamie: “All we did was change the
odds from a one-in-four chance of a tissue match to a 98% chance”.

Consent is sometimes considered valid only when the intervention consented to “serves
the best interests of the child” but there is another situation where consent is within acceptable
limits. Another standard is consent to an intervention that is “not against the interests of the
child”. Parental consent for some non-therapeutic research on children fits this category—for
example, allowing extra blood to be taken during diagnostic or treatment procedures for
“legitimate research purposes” involving no additional risk or discomfort. In a situation that
requires an intervention involving no sacrifice and no inconvenience by one child to save the life
of another child, parental consent is morally acceptable. It may even be morally required.

I think it is not possible to formulate a reasonable opinion on this case without doing
ethics because such case is very complicated and it involves a lot of things especially life of a
person. Ethics can help us to create decisions that could satisfy everyone and that can create a
positive result reason why ethics is very important.

Sources:

Fanconi anemia. (2020, June 2). MedlinePlus.

https://medlineplus.gov/ency/article/000334.htm#:%7E:text=Fanconi%20anemia%20is
%20a%20rare,syndrome%2C%20a%20rare%20kidney%20disorder.

How Is Fanconi Anemia Diagnosed? (n.d.). HOA - Hematology-Oncology Associates of CNY.

https://www.hoacny.com/patient-resources/blood-disorders/what-fanconi-anemia/how-
fanconi-anemia-diagnosed

Spriggs, M. (2005, June 1). Is conceiving a child to benefit another against the interests of the
new child? Journal of Medical Ethics. https://jme.bmj.com/content/31/6/341

What is genetic testing?: MedlinePlus Genetics. (n.d.-b). MedlinePlus.

https://medlineplus.gov/genetics/understanding/testing/genetictesting/#:
%7E:text=Genetic%20testing%20is%20a%20type,passing%20on%20a%20genetic
%20disorder.