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The Danger of "Playing God" With Genetics

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"I had seen enough of savage races to give me material to think about all the rest of my life...The propagation of children by the Unfit is looked upon... as a crime to the State."

"The world no longer needs all the individuals we are capable of bringing into it-especially those who are unable to compete and are an unhappy burden to others. If the size of our families must be limited, surely we are entitled to children who are healthy rather than defective."

"The information from the human genome project makes it a moral imperative to produce children with the best genes possible."

Can you guess which person -- Hitler, Francis Galton, Julian Savulescu, Joseph Fletcher -- said which quote?

***

I recently read an article by Tasha Kheiriddin about her daughter Zara and autism. It reminded me why I am so opposed to unfettered abortion and assisted-suicide/euthanasia.

I worry about the weakest amongst us because there's merely a thin veneer of civility covering the barbarian within. Caring for people, young and old, with extra needs -- physical, mental, intellectual -- is exhausting, financially and emotionally. Then add to that the strain it puts on to our health care system and there's great potential for abuse especially from burn-out. Think Amour.

There are gaps in our health care system. We have to prioritize our values in order to allocate finite funds.

Will we as a society continue to care for the weakest as we do the strongest? Will we continue to accord the weakest the same rights and dignity that we do the strongest? Will we think of "imperfect" children and the elderly through the lens of quality-of-life ethics and decide that they are burdens so we will help them out of this life?

We could have a new slogan: "Life with dignity or no life at all."

I opened this blog with quotes and asked who said them. Here are the answers.

In 1851 Francis Galton, half-cousin of Charles Darwin, went to South-West Africa to observe the population. It was at this time that he began to develop a new view on human heredity. He developed "eugenics": the idea that selective breeding would improve the genetic pool.

Galton's life experiences led him to write that he "had seen enough of savage races to give me material to think about all the rest of my life." And later in life, he wrote a novel, Kantsaywhere, which imagines a eugenicist in utopia. Here having children was not a right. Reproduction was contingent upon passing certain tests. "The propagation of children by the Unfit is looked upon... as a crime to the State."

Joseph Fletcher (1905-1991) an Episcopal priest who taught Christian ethics at the Episcopal Divinity School in Cambridge Massachusetts and Harvard Divinity School said: "The world no longer needs all the individuals we are capable of bringing into it-especially those who are unable to compete and are an unhappy burden to others. If the size of our families must be limited, surely we are entitled to children who are healthy rather than defective."

He also wrote that families with genetic abnormalities have a "responsibility for quality in their offspring and of obligation to the community's interest," not to pass down that genetic error.

Julian Savulescu, a neuroethicist at the University of Oxford, evangelizes good eugenics. Parents and health care providers will have a moral obligation to create children with the best genes possible.

Today, science is making it possible to remove "genetic errors" by changing the DNA in the ovum.

I am left asking what constitutes a genetic error. Missing a limb? Cleft palate? Down syndrome? Autism? And who will be the arbiter of these decisions as we learn more about our genes and heredity? Do YOU want to be God?

In the Biblical story of Job, Job finally questions God. God questions the question by asking Job, were you here at the beginning of time? Will you be here at the end? In other words, there are some things we don't understand; things we can't put into perspective because we can't see the whole story.

We are part of a process of evolution, between the beginning and the end of time.We are learning more about ourselves, how we have evolved. What if we are seeing an evolution in our species right before our eyes? What if children on the autism spectrum are the beginning of a more evolved us? From Temple Grandin to Mark Zuckerburg?

Many decades ago, there was a television programme, The Twilight Zone, by Rod Serling. On this particular episode, we're brought into an operating room where we see the back of the heads of the staff bent over the surgical table. We hear the voice of a female patient begging the doctors to do whatever they can to fix her. We listen to the dialogue amongst the medical staff as they try to repair her. We hear their sense of frustration. We watch as the nurses blot the sweat off the surgeon's brow. The doctors sadly inform the patient that the procedure is a failure. She begs them to try again. But, they tell her there is nothing more that can be done. She's defective. She will have to go to the special towns, cities of refuge, set aside for the defectives. We hear her crying and begging as the credits roll over the screen and we finally see the woman.

She'd be described today as a supermodel with beautifully chiseled features. Big wide eyes. Long wavy hair. And we wonder, what is so wrong with her that she needs to be hidden away? She appears to be the definition of beautiful.

Then we see the surgeons and the nurses in the operating room as they remove their masks and commiserate about the poor woman. And then we understand. They all look alike. They each have a very pink face; the face of a pig, the epitome of perfection.

The point is who decides who is perfect, normal, and genetically acceptable? And when? In utero, at birth, later in life when an "imperfection" shows up? Perhaps in later years when one becomes a burden to family or society?

Quality-of-life and utilitarian ethics (greatest good for the greatest number) could make for dangerous bedfellows.

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