Huntington's and ethical issues

8/11/2019 Huntington's and ethical issues

1/5

Kerstin Schkrioba

Dr. Wesson

Freshman Seminar

September 6th, 2014

A Comical Look at Medicine

One of my favorite comedians, Joe Machi, has a stand-up routine that is not only sportive,

but also has an insight as to how we look at the past and how we view medicine.

My married couple of friends said, Joe, we dont want to bring a child into the

world the way the world is now.And Im like, What do you mean the way the world is

now? The best its ever been in history?200 years ago, people were having 15 kids, most

of them would die. Most of your life was having kids then watching them die. Then you

would dieof something they prevent now by washing your hands. Im not even sure why

being a doctor was an actual job. At best they could do was tell you the name of what you

had. Joe, youve got tuberculosis..Lie downin a room full of people with

tuberculosis.Joe, your arms infected.Well cut it offAlthough the stump will also

get infected. Well keep cutting that stump shorter until youre dead. Like your kids.(Hulu)

I think this joke really epitomizes major differences between medicine 200 years ago, and

now. Without even getting into the idea of modern medicine, the way we view human life is

drastically different. In the joke, 15 children are born and there is no hope for the survival for every

offspring. I would argue that society now could not handle the idea of infant mortality rates being


2/5

that high. In France at the beginning of the nineteenth century, almost half of all children born did

not reach their 10th birthday (mortality); in 2012, only about 3 children die out of every 1000 live

births (understanding). This drastic difference is based on our changes in lifestyle, our heavy reliance

on doctors, the idea that breastfeeding is usually always beneficial to the child, and modern

medicine.

Because of our longer life spans, our biggest worries medically have far surpassed

tuberculosis and infections, we have diseases that are hereditary and modern medicine cannot cure.

Because man cannot simply accept death, they must train, learn, and sacrifice in the name of the

greater goodto find ways to cheat genetics and even glimpse into the future of an individual too

see which genetic switches are turned on to predict the onset of devastating diseases.

Huntingtons Disease is caused by a genetic mutation on chromosome 4. There is a specific

portion of DNA that reads CAG, and in a healthy person only repeats between 10 and 30 times. If a

person born with more repeats of CAG, they will get Huntingtons. This disease gets worse over

time, and is extremely hereditary. If only one parent has it, you have a 50% chance of inheriting it. If

both parents have it, you will certainly have it and pass it along to any potential children. If you have

Huntingtons you will slowly lose fine motor control and cognitive decline leading to dementia. It is

irreversible and it has been used in television shows and movies as the diagnosis that will inevitably

lead to the characters demise.

It seems like a movie script was published in papers in 1993 when it was announced that by

the use of a blood sample, a doctor could count the repetitions of CAG on chromosome 4. While it

may seem that this is the answer to prayers all over the country, the promise of prematurely

diagnosing this disease raises more ethical questions than answers.

There are many situations that can arise with this knowledge to determine if an individual

has this disease. If one parent has the disease, there is a 50% chance of inheritance, and from birth it


3/5

can be diagnosed now. That means that a doctor could be solemnly informing the parents of a

happy, healthy, newborn that their beloved child will only live around 30 years without the

intervention of this debilitating disease. The child would grow up forever knowing their good days

are limited. This will cause inconceivable emotional stress on the child.

A solution to the dilemma of a child growing up already knowing their fate would be waiting

until the individual reached legal age, 18. This would free the government of the rights and

responsibilities of a minor. Now, a consulting, legal, adult would be making the decision to know

their own destiny, assuming there is no ulterior motive. Health insurance companies, jobs, and

schools could theoretically request for you to be DNA tested, much like they demand drug

testing.

In 2014, the United Kingdom passed a law stating that genetic information cannot be used

in most cases while writing and approving health insurance plans. Surreptitiously, Huntington s is

specifically excluded (Experts). This can cause discrimination, and if more businesses are targeting

Huntingtons disease, selective abortions can start rising. If a parent knows how difficult is it for

them to function in a society that is so timid around those born with this disease, they will have

second thoughts about bringing in a child who could have the disease as well.

If history repeats itself, it is never good when personal medical information is forced from

any individual. If this data is collected, even if it is for harmless reasons, these people could vary

easily become a target for a eugenics movement. Since it is so hereditary, eradicating the disease is as

easy as sterilizing those with the disease, or creating such a difficult life financially for those infected,

that they do no wish to start a family.

Machi pokes fun at a time in history when doctors did not have the technology to see into

the future and pre-diagnose, but they did try to uphold their hippocratic oath. They tried within their

ability to alleviate pain, prevent disease, care for the sick, and to remember that they are always


4/5

treating a sick human. The oath was simple enough to understand during Hippocrates, and even 200

years ago, but now with ethical dilemmas, doctors need to take a stand they believe in. Patients will

always doctor-shop until they find a professional with the answers they want, but it is important that

the doctor lays out the pros and cons of learning their fate, as well as making sure the individual is

ready to accept the responsibilities that come with learning such potentially tragic news.

I think that it is hard for me to say if I would want to know for certain, as I know that I can

never go back in time and un-learn the information. Looking at the past, billions of people went

through their lives without knowing in full detail when specific diseases would take their lives, and

they were able to live very fulfilling lives up until that point. If I learned today that I was diagnosed

with Huntingtons I am not certain if I would stay at this university. I would defiantly continue my

education, and I would still plan on going to med school, if they would still accept a person who

may not be healthy enough to make it through, but I would want to be closer to home.

I think is so interesting to look at gene therapy and how we are treated Huntingtons. If we

look to the past, we see blissful ignorance, and the question arises; are we better off knowing

everything we possibly can? This is a turning point as we move towards the future, decisions will be

made and that will shape the future of the medical industry. If there are loopholes in laws, and

discrimination can take place against people born with any type of disease we can see the beginnings

of a society where we can artificially choose babies who are not born with chromosomal deformities,

and businesses can choose to not hire based off of DNA tests. This is a world that I hope I do not

live to see.


5/5

References

Expert backs gene test disclosure. (2007, July 6). BBC News. Retrieved September 6, 2014, from

http://news.bbc.co.uk/2/hi/health/6731623.stm

Mortality rate, infant (per 1,000 live births). Retrieved September 6, 2014, from

http://data.worldbank.org/indicator/SP.DYN.IMRT.IN

Understanding Your Ancestors: Western European Ancestors: Demographics: Death and Illness.

Understanding Your Ancestors: Western European Ancestors: Demographics: Death and Illness.

Retrieved September 6, 2014, from

http://www.understandingyourancestors.com/wea/death.aspx

http://www.hulu.com/watch/648669

Huntington's and ethical issues

Documents

Transcript of Huntington's and ethical issues