Michelle Larsen

English 2010
Salt Lake Community College
26 June 2016
Genetic Testing for Huntingtons disease: Useful or
Unnecessary?
Of all the genetic disorders one can acquire, Huntingtons
disease is the most relentless and cruel. With no effective treatment,
death is inevitable. For those that carry the gene, they have a fifty-fifty
chance of passing it along to their offspring. And for those that inherit
the gene, the chances of developing the disease are one hundred
percent. Huntington's disease usually starts to manifest itself later in
life. Symptoms of Huntingtons gradually progress until the affected
individual

experiences

expressions,

and

unsteady

involuntary

walking,

muscle

uncontrollable

spasms

(Munson,

facial
221).

Everyone deals with Huntingtons disease differently. Before mental

deterioration becomes too advanced [Huntingtons disease] victims
often kill themselves out of sheer hopelessness and despair. Despite
the drastic and terrifying changes one can experience in life if they
develop this deadly disease, hope is still out there. People are being
made aware of this disease and researchers are working every day to
find an effective treatment for it. Looking at different perspectives can
give others insight into the personal effects and life changing events

the disease can create. Outlined ahead are experiences from three
different people and familieseach having their own personal stories
to share about Huntingtons disease.
For a person by the name of Jenny Rogers, she has not let her
chances of developing this disease get her down. Jenny Rogers
introduced her story by stating that her mother was diagnosed,
suffered, and died from Huntingtons disease. When Jenny was only
nine years old, her mother was diagnosed with this disease after
several months of experiencing symptoms of Huntingtons, including
involuntary muscle contractions and memory loss. Later on, she
recalled when her mother passed away. Jenny was fifteen years old at
the time. She remembers her mother telling her that she loved her and
then going into her bedroom for the majority of the day. Jenny did not
sense that anything was wrong until she found the note her mother left
with her last words. Jenny has let this experience of her mom passing
become her chance of raising awareness about the disease so that
others know the harms and implications of it. She knows that she has a
fifty percent chance of developing Huntingtons disease, but has
chosen to live her life without being tested to know for sure. She
stated, Getting [tested] can give you an almost certain death
sentence (Jennys Huntingtons Story). Whether or not she decides to
get the test will not change her outcome, and regardless of the

possible test results, she can still help raise awareness and live her life
as normally as possible.
Testing for this disease is still fairly new and controversial. Many
guidelines have been placed on the testing procedures to ensure that
anyone receiving the test is given enough information to provide
proper consent.

In an article titled Recommendations for the

Predictive Genetic Test in Huntingtons Disease, the decision to be

tested for the gene is described as, the sole choice of the person
concerned and that no requests from third parties, be they family or
otherwise,

should

be

considered.

Other

guidelines

and

recommendations for this genetic test include not allowing minors or

those under the age of eighteen to be tested. This is to avoid any
persuasion from parents or other family members who may want the
child to be tested.
In Richard Munsons book Intervention and Reflection, he
describes a situation regarding a woman named Nancy Wexler and her
sister, both at risk for Huntingtons disease. They had both assumed
that once a test for determining whether they were carrying the HD
gene was available, they would take it. In 1993, researchers found
that the gene was identifiable on chromosome 4 (Munson 222). After
the genes location was found, a genetic test for its presence was
quickly developed. Nancy and her sister did not end up getting tested
for Huntingtons because of their fathers questions, What are we

doing here? Are we sure we want this? (Munson 222). When he asked
these questions to his daughters, he was referring to his concern that
getting tested would change their outlook on life. His worry for them
came from the fear that discovering they carried the gene meant living
a life waiting for the disease to manifest itself. These questions are
examples of the many ethical concerns genetic testing imposes. Their
father was concerned about the effects on his daughter's lives if they
were to receive unwelcome news as a result of the test.
One thing that many people worry about is whether or not they
have an obligation to be tested. If someone knows they have a high
chance of developing Huntingtons disease later in life, should they be
required to tell their future spouse? By doing this, partners are
admitting that certain genes are considered more undesirable than
others and that they are not willing to risk the potential of living
through the difficulties that the disease imposes. This also affects the
decisions about whether or not to have children. In vitro tests are
available, and those that find that their future child carries the HD
gene have to ask themselves what they value the most and what they
feel like they need to do. They know that their children will inevitably
develop the disease, even if it doesnt happen for several decades.
The International Huntingtons Association allows people and
families struggling with the disease to share their stories. The
Patterson family shared their story about their mother, who suffered

and died of Huntingtons disease at the young age of forty-one (The

International Huntington Association - Huntington's disease worldwide
information and support).

Hank Patterson recalls, For two decades,

my siblings and I watched HD take away her bodily functions, her

memories, her personality, her dignity. Hank took this personal
experience and decided to plan his life in a way he saw fit. When his
wife and he got married, they decided that he should get tested for
this gene. After discovering that he was a carrier, and thus had a fifty
percent chance of developing Huntingtons, he stated that if he were to
find out that he had the gene, "as horrible as it was, [it] at least
allowed us to make the right decisions and plan for the future. Hank
Patterson and his wife took advantage of the genetic testing resources
available, and their daughter Nicole was tested for HD in vitro. When
they found out that she did not carry the gene, he felt it was like
winning the World Series.
Eventually

and

inevitably,

Hank

Patterson

did

develop

Huntingtons disease (The International Huntington Association Huntington's disease worldwide information and support). His daughter
Nicole shared her experiences with watching her father go through the
struggles and challenges that HD consequently imposed. She stated,
The hardest thing to take was when they told me what would happen
to my dad. I had seen what my grandmother was like, and honestly, it
terrified me. She continued on to say that the worst symptom she saw

him dealing with was memory loss, as days would go by where her
father would not recognize who she was.

Nicole is hopeful that

researchers will find a way to delay or even cure HD, as new medical
advancements are being made every day.

She stated, my only wish

is for my dad to get better and to be in my life for just a few extra
years. After sharing her story she invited those reading her story to
help in any way they could, to make sure that people suffering from
Huntingtons are heard and can eventually be treated effectively (The
International Huntington Association- Huntingtons disease worldwide
information and support).
By looking at these personal stories about Huntingtons disease
and its detrimental effects on the lives of those suffering and their
families, many might say that genetic testing is useful. It can provide
people with peace of mind as they are more prepared for what is to
come. It can also urge them to raise awarenesswhether it is for
Huntingtons disease or another genetic disorder, this can help them
gain the resources they seek for more research and treatment.
However, it was also seen in these personal experiences that being
tested changes the way one thinks about many things in life, from how
they live day to day, to how they plan their future families. But
regardless of the personal decision to gain knowledge of a small part of
ones genome, it is important to realize that this decision is can be life
changing. No one should be forced to live with the terrifying knowledge

that his or her chance of inheriting a deadly genetic disease is high,

and no one should be forced to live in the dark, always wondering if
they have anything to worry about. With all the resources available,
people can feel safe knowing that their story will be heard and taken
into consideration in the ongoing debate of genetic research.

Works Cited
"Help or Hindrance: Young People's Experiences of Predictive Testing
for Huntington's Disease." - Forrest Keenan. N.p., n.d. Web. 27
June 2016.
Gdbrown56. "Jenny's Huntington Story." YouTube. YouTube, 2009. Web.
27 June 2016.
Munson, Ronald. Intervention and Reflection: Basic Issues in Bioethics.
Boston, MA: Wadsworth/Engage Learning, 2014. Print.
"The International Huntington Association - Huntington's Disease
Worldwide Information and Support." The International
Huntington Association - Huntington's disease Worldwide
Information and Support. N.p., n.d. Web. 28 June 2016.