Scientists had a breakthrough in being able to silence or shut down the extra copy of the twenty-first chromosome that results in Trisomy 21, also known as Down syndrome. This breakthrough is stirring up many philosophical and ethical questions and concerns, especially in us parents of children with Down syndrome.
I have been asked:”Would you do this for your child? Would you shut down the extra chromosome in your Christina?” The answer is not a black and white yes or no, because we are not just talking about offering some natural supplements that will support her health, halt her more than normal oxidative stress, increase her focus and brain-function and balance her emotions. The root of this question really is:”Would you change your child?”Scientists had a breakthrough in being able to silence or shut down the extra copy of the twenty-first chromosome that results in Trisomy 21, also known as Down syndrome. This breakthrough is stirring up many philosophical and ethical questions and concerns, especially in us parents of children with Down syndrome.
Isn’t this really another example of how we value people based on their intelligence and achievements? People that are smart, make lots of money and contribute material things to society are held in high regards. On the other hand, people that have a lower IQ and depend on others are considered a liability and are expendable.
Science does this in the name of improving the quality of life of people with Down syndrome, under the disguise of wanting the best for this group of people. So, does a smart person with fewer struggles have a happier life? Does someone with lots of achievements have a better life? These are philosophical questions that cannot be answered very easily.
We all have a God-given intrinsic value without qualification. We all have strengths and limitations, gifts and struggles, and if we live long enough, most of us will become disabled to some degree at some point in our lives either through an accident, illness or old age.
Down syndrome is not a disease, it’s a genetic condition, and it doesn’t make them less human. They can live healthy, fulfilling lives. We should not try to change people with Down syndrome so they can fit better into this world, but we need to urge the world to be more accepting and accommodating. We need to provide better educational opportunities, access to therapy and meaningful work. We shall not assume that the problems are located within the individual with Down syndrome, but rather within our society.
My daughter’s appearance, personality, identity and innocent behavior is linked to that extra chromosome, in other words we cannot rationally argue on this subject. We are listening to voices who do not intimately know people with Down syndrome and don’t intimately know the families who take care of a member with Down syndrome, and they don’t know the people who’s lives are touched and made better because of a person with Down syndrome.
Taking away my daughter’s chromosome is taking away something essential to who she is. By altering the genetic code we are playing God. We are denying human limitations and glorifying physical perfection and economic productivity.
I want for my Christina and all others with Down syndrome to have all the support they need to become who they were meant to be, and I don’t think that science can help with that goal.
We need to receive each other as we are.
If you like to find out how you can better advocate for your child with Down syndrome, just send me an email to: firstname.lastname@example.org with the words “Advocate” in the subject line, and I will contact you and discuss different options.
Write to me at: email@example.com and write “Advocate” in the subject line.
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