Monday, October 27, 2008

Eugenic Researchers, Genetic Testing, and Eugenic Discrimination

Yesterday’s Washington Post ran a story that should give us great pause.

The piece reported on advances in genetic testing that make it easier to detect many more anomalies at earlier stages of pregnancy. I think we should be very aware that a primary aim of genetic testing is eugenic.

First, what the tests mean in the real world: Medical tests, including all genetic tests, are not perfect. 

At the level of the family, what this means is that for a percentage of those tested, the results will be wrong. That is, a percentage of terminations will be of children who actually do not have Down Syndrome, or any other genetic defect, for that matter.

Second, what the tests mean at a societal level: Genetic in-utero testing unambiguously seeks to separate the genetically normal from the genetically defective. As the tests become more sophisticated, more subtle genetic differences will become apparent.

That means, inevitably, that we will increasingly separate a larger and larger group of people into a variety of genetically defective categories. Furthermore, the genetically different will be increasingly segregated, in whatever way, from those who are genetically similar.

Genetic discrimination. Genetic segregation. For more pregnant mothers, destruction of their pregnancies based on genetic makeup, nothing more, nothing less.

It’s already happening.

Example: Genetic discrimination of Down Syndrome children. The vast majority of Down Syndrome pregnancies are terminated, exclusively and only because they are (a) genetically different, and (b) because that difference is overwhelmingly seen as negative and undesirable. Parents are heavily, and routinely, pressured to terminate the pregnancy. There’s very little evidence that the doom and gloom is balanced by other realistic, but not necessarily negative information. 

Who are the people making the case for genetic difference being negative, undesirable, and therefore worthy or termination?

Why, the medical professionals and genetic researchers of course.

Enter Arthur L. Beaudet, of Baylor's Department of Molecular and Human Genetics, who opined in the Post article that these tests are “ready for prime time:”

For people who want the best possible prenatal diagnosis and want the maximum information, this is the best option.

Here’s what we can be sure of: What Beaudet is saying is that these tests provide the most accurate test for rooting out genetic anomalies.

Because that’s exactly what they want to do – get rid of the genetically different.

Don’t believe me? Listen to the good Dr. Beaudet:

Some of these disorders are quite burdensome. They require lifelong nursing care. In some cases these children never walk, never talk, never feed themselves . . . It can have a major impact on the family. People say, 'I wish you had given me the opportunity to know ahead of time. It's really destroyed our lives.' That's why women want to know.

This is a nakedly eugenic position.

Not even a show of pretense.

If you are genetically different, then you are a burden. Your quality of life will be bad. Your family will have to deal with you, what a hassle. You will have destroyed your family’s lives by you, yourself, being alive.

The good doctor is, I’m sure a distinguished professional in his field. Here’s a list of some other people distinguished in their fields, who thought eugenics was just fine:

Helen Keller, Alfred Nobel, Margaret Sanger, Adolf Hitler, Alexander Graham Bell, Woodrow Wilson, H. G. Wells, Winston Churchill, George Bernard Shaw.

Just to name a few. 

Ah, the Brave New World. I can’t wait . . .


Sarah said...

Brave new world indeed. I can't understand why humanity seems to be so scared of everything that is "different" and feels the need to destroy it.

Eugenics supports the proposition that we have the right to determine who should live and die based on physical characteristics. Whatever happened to the idea that "variety is the spice of life?"

I fear for a world where genetics is used to determine what lives and what dies. We saw the results of that in WWII.

Terri said...

People's treatment of those seen as "not us" is horrifying. (Hence the exhortation to love others as ourselves, I believe.) Diversity is good for us and people with disabilities are "us."

Dr. Mark Mostert said...

Thanks, Sarah & Terri.

I think we're at a point, unfortunately, where the culture of death is far enough advanced that it's ok to openly promulgate eugenicist ideas and perceptions.

For better or worse, most of the world is blissfully unaware. Grab everyone you can to help spread the word.

Anonymous said...

This was true in the case of some friends of mine. The test showed their expected daughter would be severly handicap and the doctors recommended they terminate the pregnancy. Being Christians, that was not an option. So they endured a long and agonizing pregnancy. When Sara was born, she was absolutely perfect and is now a lovely young teenage lady.