This week in my biology class my professor asked the following question:
Scientists have learned a lot about genes. It is the hope that one day scientists will be able to remove a gene that causes a defect and replace it with a “normal” gene. They can already do this for some genes. How nice would it be to remove the defective genes and cure diseases and disorders such as Cystic Fibrosis, Down Syndrome, Sickle Cell Anemia, etc.? Some people also think that it would be great to determine the eye color, hair color, and other traits of their offspring. What should we use our knowledge of genetic information to control? Should we cure diseases? Is death not a natural process of life? Should we form “designer babies”?
This is my response:
Yesterday Ursula Presgrave, a former reality star in the UK, posted on Facebook that: ““Anyone born with down syndrome should be put down, it’s just cruel to let them lead a pointless life of a vegetable.”
Ms. Presgrave is not alone in her feelings as demonstrated by the fact that 90% of all babies diagnosed with Downs Syndrome are aborted each year. Ironically, of those who are diagnosed with Down Syndrome, 99% say that they are happy, and 97% of families with a member who has Downs Syndrome believe their relative with an extra chromosome has enriched their lives for the better. These are staggering numbers which fly in the face of the “common wisdom” of which Ms. Presgrave is such a glaring example.
When scientists tread past the strict confines of the scientific into the realm of “should we, should we not” there lies a dangerous temptation to use the observable empirical data to draw inaccurate conclusions about the nature of the world around us. Our biases are based firmly in the personal experiences which we alone harbor, that others may share but cannot duplicate. Sitting comfortably where we are as who we are, the idea of having a genetic condition like Downs Syndrome sounds horrific, and for the majority of women faced with the news about their child having this condition, the horror goes so far as to lead a majority of those women to blindly react and terminate their child for fear of their quality of life, when the evidence, the actual data that can be observed and recorded says the exact opposite fate is awaiting not only her offspring, but herself.
Science is only a tool. It is a method of viewing the world. It is not ethics. It is not morality. It is no more dangerous to humanity than a loaded gun sitting undisturbed on a table is a danger to people. In fact, just like that gun, what makes science beneficial or harmful is the intentions of the person wielding it.
Scientists are doing their jobs when they discover how things work. It’s what science is for. What is done with that science is a broader question outside the realm of scientific inquiry. It is a matter of character whether or not we use tools at our disposal to defend the weak, to succor the ill, to cherish the individual.
I personally do not think that life is so unremarkable as to justify treating living things as objects to be manipulated or dominated for ones own comfort or preferences. There are ways to honor and respect the living things around us, human or otherwise, in all things we do.
Temple Grandin, for example, is a woman with autism who was diagnosed with the condition back when scientists still thought that the condition was a result of improper bonding with the mother. Even in the face of such stigma, Temple’s mother worked with her child until she was highly functional, so much so that Ms. Grandin became a professor of animal science at the University of Colorado. She used her autism to her advantage, and in the 1970s she designed slaughter houses for cattle that virtually eliminated the stress of the animals, leading to less spooking, less injury, and less accidental death. Ms. Grandin used science to respect the natural world, to bring comfort and peace to animals that–whether we like it or not–are going to be slaughtered for meat anyway, and she did it using a condition so many parents, educators, and yes, even scientists say rob human beings of meaningful quality of life.
Science ceases to be science when it begins making value judgments about the world and the living beings within it. I would say that the urge to dominate and order the world in a manner more fitting to our liking has been the root intellectual process behind the worst atrocities of mankind, of which there are too many for me to reference.
So please, consider in fact that no decisions can be made about the value of others from the safety and comfort of our own experiences. Only the individual can truly know whether they believe their life is worth living.