It's For The Children - Genetic Screening of Parents

Ian C. Langtree - Writer/Editor for Disabled World (DW)
Published: 2011/01/14
Topic: Editorials and Op-eds - Publications List

Page Content: Synopsis - Introduction - Main

Synopsis: People with Disabilities have been a part of every single human society and pre-society since the dawn of humanity.

Introduction

Focus

An article in NPR today titled, 'New Genetic Test Screen Would-Be Parents,' by Nell Greenfieldboyce; however, suggests that the days when many forms of disabilities may simply disappear is near.

Is it a question of love

To some potential parents, only the best for their child means love. For other potential parents, they would love their child no matter what. In America today, far too many parents to be want everything from Eddie Bauer baby carriers to custom-made health foods in baby-sized jars for their child. From specialty baby cribs to the finest baby clothing, these parents desire only the image of a somehow, 'perfect,' life for their child. For these parents, 'love,' is equivalent to products in many ways.

Nell writes, "A newly developed test could screen would-be parents for hundreds of different disease genes, to make sure they are not passed on to any future children. The test's makers say it should cost less than $400 and that routinely offering it to prospective parents could someday eliminate many deadly childhood diseases."

Does love for a child include exceptions? Should would-be parents approach a pregnancy from the perspective of, 'I will love my child, but only if they do not experience a form of disability' An argument is clearly being made that elimination of forms of disabilities in children is a positive thing, but is it? Would these same potential parents choose to eliminate a child based upon another minority status; say - because the child might be Native-American or Asian-American

Before you know it, parents might be ordering designer babies.Children who only have blond hair and blues eyes, or brown hair and green eyes, or any preference they choose should this continue. Parents might be able to dictate how tall their child will be when they reach adulthood, and choose perfect teeth for them as well. Maybe one day everyone will wear a size seven shoe.

The article also states: "We definitely want it to be pre-pregnancy. We do want it to be couples," says Stephen Kingsmore, a physician-researcher at Children's Mercy Hospital in Kansas City, Mo., who led the team that developed this new test. "I think it's going to be a personal decision, whether a couple wants to be tested."

"A personal decision," among parents living in a nation where stigma, hatred, bias, and prejudice against People with Disabilities is still highThere was no need for Stephen Kingsmore to reach for enforcement of this new testing; many potential parents will reach for it out of ignorance, and quite willingly. While Stephen Kingsmore and his organization are in the private sector at this time, should the government take over such a project there may come a day when genetic testing such as this becomes a standard in health care.

"The inspiration for this new test came from Craig and Charlotte Benson, of Austin, Texas. In 2008, their daughter Christiane was diagnosed with Batten disease, a rare neurodegenerative disorder that currently has no cure. Craig Benson works for a biotech company, so soon after his daughter was diagnosed, he and his colleagues were discussing how difficult it is for rare childhood diseases to get much attention or research that could lead to cures. They wondered about new ways of trying to prevent these diseases."

One can only imagine the level of fear present in Craig and Charlotte Benson of Austin, Texas when their daughter was diagnosed with Batten disease. The fear was apparently so great in Craig that the entirety of his efforts have been based upon it. His actions certainly drive and promote fear of People with Disabilities, describing us as, 'diseased.'

If asked, Craig would most likely tell you that he very much supports diversity.

Yet his genetic testing product does everything to eliminate diversity by removing People with Disabilities from the picture. The anti-diversity, fear-based genetic testing product Craig is helping to promote and has assisted in creating can only be questioned at the very least because of what it is based upon.

The article continues, "For less than $400, it can check a person's DNA for all mutations in genes related to nearly 448 severe childhood diseases. And Kingsmore says that's just the beginning. "Over the next six months we'll be taking the number up to 580 conditions," he says, "at which point we'll have represented just about every childhood disease that's severe enough to merit inclusion."

Stephen Kingsmore must be very proud of this genetic testing product aimed at removing People with Disabilities from society. He must be equally pleased that Craig and Charlotte's fears, as well as those of other potential parents are being eased. Craig and Charlotte are so afraid of People with Disabilities, in fact, that they have begun a nonprofit organization with the goal of promoting and distributing this genetic testing product, which may become widely available to potential parents soon. A doctor will be able to assist in the screening-out of People with Disabilities, and the fears of parents will be eased - even as they express clear prejudice towards a minority population in America.

New Genetic Test Screens Would-Be Parents
www.npr.org/2011/01/13/132908098/new-gene-test-screens-nearly-500-childhood-diseases.

Author Credentials: Ian is an Australian-born writer, editor, and advocate who currently resides in Montreal, Canada. He is the founder and Editor-in-Chief of Disabled World, a leading resource for news and information on disability issues. With a global perspective shaped by years of travel and lived experience, Ian is a committed proponent of the Social Model of Disability-a transformative framework developed by disabled activists in the 1970s that emphasizes dismantling societal barriers rather than focusing solely on individual impairments. His work reflects a deep commitment to disability rights, accessibility, and social inclusion. To learn more about Ian's background, expertise, and accomplishments, visit his full biography.