Sunday, June 4, 2017

Is it ethical to deliberately pass on genetic anomalies?

This morning, I read an interesting article about Zach and Tori Roloff of the TLC series Little People Big World.  I have seen the show before, but it's been several years.  I didn't know that Zach and Tori were expecting a baby, but the news popped up in my Facebook feed.  When I read it, I learned that their new son, Jackson, has achondoplasia, like his father, Zach.  That means that Jackson, like his father, is a dwarf.

Many different people shared this story.  I happened to read the version shared by George Takei.  Given the type of people who follow Mr. Takei's Facebook page, the comments were a bit more controversial than they were on other places where this news was shared.  One guy-- who was either really brave or stupid-- posted this, along with an angry smilie.

The only species on earth that perpetuates its mistakes in genetic material on purpose.

Naturally, this comment prompted a number of outraged responses.  People were angry that this poster had the nerve to state that dwarfism is a "mistake".  One lady posted this.

Excuse me? Being a little person is not a mistake.

Reply
7 hrs

Later, the lady who posted the above comment identified as a "little person" and posted this...

No eugenics is also advocating that only people with "good genes" reproduce. Deciding whether or not to reproduce is a personal decision. My parents knew they had a probability to have a dwarf and still chose to have me. I am not genetically inferior. My birth and life are not a strike against us. Do you not understand what you are writing and how offensive it is to tbose of us who obviously do meet your criteria for being genetically correct.

I am not genetically inferior. I am shorter than average. Who decides what is a genetically superior height? I don't need longer legs so I can hunt for food. My legs work well enough to walk through a grocery store, drive a car, and get me from point a to b. I don't need strength to draw a bow. Science and technology keep me from needing to be a hunter and gatherer. I can type 130 wpm. I have a college degree and an IQ of 150. What is your idea of good genetics? Should I be 5'10", white, blonde and blue eyed. I wear glasses. Should people with non 20/20 eye sight not reproduce.

I will grant that the poster who made the first comment was harsh and insensitive.  I can understand why people were offended.  At the same time, I wonder how many prospective parents are overjoyed to hear that their child has a genetic anomaly.  Do parents pray that their children will be born "different" somehow?  Do parents wish for their babies to be born with special physical, mental, or emotional challenges that might make their lives more complicated and difficult?  My guess is that the vast majority of them do not.  So, on one level, the first poster makes sense, even if the way he expressed himself is very objectionable.

This particular debate went on for a bit, so I'm not going to post the whole thing.  I will say that I noticed this subject brought out the emotions in a lot of people.  Many people seemed to be commenting from their hearts rather than their heads.

It reminded me of an article I read in the Washington Post about fifteen years ago.  Bill and I were dating and, in those days, it was his habit to go out on Sunday mornings and pick up a paper for me.  I remember sitting on the floor in his shitty studio apartment and reading it over coffee and doughnuts.  I came across this featured piece about couples in the deaf community deliberately trying to have deaf babies.  I remember reading outraged comments about this movement.  Many people were offended that deaf parents would want to intentionally inflict deafness on a child.

From the article:

Several months before his birth, Sharon and Candy -- both stylish and independent women in their mid-thirties, both college graduates, both holders of graduate degrees from Gallaudet University, both professionals in the mental health field -- sat in their kitchen trying to envision life if their son turned out not to be deaf. It was something they had a hard time getting their minds around. When they were looking for a donor to inseminate Sharon, one thing they knew was that they wanted a deaf donor. So they contacted a local sperm bank and asked whether the bank would provide one. The sperm bank said no; congenital deafness is precisely the sort of condition that, in the world of commercial reproductive technology, gets a would-be donor eliminated.

So Sharon and Candy asked a deaf friend to be the donor, and he agreed.

From what I've read so far about Zach and Tori Roloff, which is admittedly not much, they didn't necessarily plan to have a baby with dwarfism.  I'm sure they knew the risks and were okay with them.  And really, thanks to TLC shows like Little People, Big World and The Little Couple, more and more people are becoming acquainted with dwarfism and the challenges it presents, as well as the fact that little people can lead normal lives, perhaps with a few alterations of their environments.  I remember watching Jen Arnold on The Little Couple go about her business as a doctor.  I watched Jen and her husband building a house that was custom made for people who aren't a normal height.  

Hell, the other day, I even started watching a German TV show (filmed in Stuttgart, no less) called Dr. Klein.  Klein is the German world for small and the star of the show, actress Christine Urspruch, is herself a dwarf who plays a doctor with dwarfism.  She wears a sexy red dress and red high heeled pumps.  She drives a little red car.  She has a family-- including kids, although if memory serves, the kids on Dr. Klein are all normal height.

So yeah, a lot of people are being exposed to people who are different and realizing that they can have normal lives.  But does the fact that people who have congenital "defects" (for lack of a better word) mean that we should, as people, be actively trying to promote them?  Is it fair to deliberately pass on genes to a child who may have a hard time adapting to that condition?  Is it fair to handicap a child on purpose?

I have seen videos of hearing impaired people who hear something for the first time in their lives.  The looks on their faces are unforgettable...


This deaf lady hears music for the first time...


Grayson hears his father speak for the first time.

I'm sure it's different for little people, although there are so many different types of dwarfism and they seem to affect people differently.  A person with a normal sized trunk and short arms and legs might have different challenges than a person who body is proportioned, but very short or small.

In any case, regardless of how a person feels about this particular issue, I will go on record as saying that I agree that people must make their own reproductive choices, although I do think those choices should be made with much thought and consideration.  In the past, I have written about my neighbors whose family was heavily affected by Huntington's Disease, a congenital and ultimately fatal disease that causes people to lose control of their bodies and eventually their minds.

I remember my neighbor, who died at age 39.  She'd been a mother of three.  When we were children, she told me that she had a fifty percent chance of developing Huntington's Disease.  I remember her father and her brother, both long dead now, who were very sick and disabled.  My neighbor's father was forced to move into the local psychiatric hospital when he was in his 30s.  At one time, he'd been a perfectly normal man who was able to father two children.  When I met him, he was 32 and wheelchair bound.  He couldn't speak normally or walk.  His son, then about 13, was also very sick.  He drooled constantly, required home care, and could not ride the shiny red bike parked in the garage.  My parents later bought that bike and gave it to me after the boy died at age 14.  I don't think he'd ever been able to ride it, so it was like brand new.

Many years later, the boy's sister, my neighbor and a friend, was afflicted with the same devastating disease.  Two of her three children are now dead, though neither died of Huntington's Disease.  Both died in car accidents.  My friend's daughter, aged 2, was tragically killed when her mother accidentally ran over her.  Her oldest son died just a couple of years ago in a more normal car accident.  They left behind a brother who has a fifty percent chance of getting Huntington's Disease.  I wonder what it must be like for him, knowing that he might die at a young age to a cruel disease that his mother knew full well she was at risk of passing on to him.

Maybe dwarfism isn't the same thing as a disease like cystic fibrosis or Huntington's Disease.  Maybe being a little person is more like being born with one blue eye and one brown eye (I knew someone with this genetic "anomaly", too).  Maybe it's like being born with perfect pitch, which I have-- although I'm not sure that is necessarily a genetic thing, since I don't know of anyone else in my family who has it.  Maybe being a little person presents few challenges other than being really short and perhaps disproportionate.  Or maybe there will be challenges.  I don't know.  But I must admit that article and the comments really got me thinking today.  




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