A Prequel to Gattaca?

The 1997 film Gattaca, written and directed by Andrew Niccol, portrays a futuristic society where babies are genetically engineered according to parental references.  The film features a society that consists almost exclusively of such artificially built individuals, with those who are born in the archaic, natural manner occupying the fringes of this society.  In order to protect the rights of what are referred to as the “valids” and thereby keep out the inferior “invalids,” each individual’s genetic material is constantly sampled and monitored.  Every person’s DNA is stored in a database, making multiple scans and random genetic sweeps in the workplace very efficient.  The story follows an “invalid” who has a dream of becoming an astronaut, a job open only to the genetically enhanced elite.

But my intention here is not to provide a synopsis of the film, which is very good and is certainly well worth the time it takes to watch.  Rather, I wanted to

Parenting, testing, disability, autism

In a recent comment on an older post of Kristina Chew’s, “Eugenics, Fear, and Pain” over at Change.org, one parent says:

I found out three days ago both of my children are positive for the PTEN mutation. There is a link between PTEN and autism. I think it’s that one in every 5 people with the mutation have autism–very strong odds. I opted for genetic testing with my son. The triple screen came back very abnormal. He had 1:6 odds of Down Syndrome. I opted out of an amnio. I’m glad I did because he did not have Down’s and I’m unsure they could have told me if he had the PTEN mutation. Since only 1 in 250,000 people have this mutation I highly doubt he would have been checked for it. I didn’t know I had the mutation until 2007 even though I had every sign there is–just no name. We did not do genetic testing with our daughter. I guess the point of this is sometimes problems exist that aren’t detected. No one is guaranteed what society sees as a “perfect” child. My daughter was placed on the PDD spectrum before her second birthday. We didn’t understand the link at the time as this was around the same time as my PTEN diagnosis. She’s so beautiful and smart. The only problem is reaching her through language sometimes but intervention is changing that. Last night she was speaking to me quickly as she does and I didn’t understand her. I slowed her down and BOOM there was meaning. It’s frustrating for her in not being able to get her point across easily but she’s making great strides.

I just cannot fathom anyone not thinking my child’s life is worth it. As someone who has been through 24 operations and 3 diagnoses of cancer by age 30, my quality of life hasn’t been the greatest. My own father once said if he had known what I would go through he wouldn’t be sure he and mom would have had me. I cannot begin to explain how painful that was.

Philosophy, Eugenics and Disability in Alberta and Places North – Simo Vehmas Part 3

On October 25, 2008, the What Sorts Network hosted a public symposium to examine, well, philosophy, eugenics, and disability in Alberta and places north.  Four speakers were featured on the panel, Dick Sobsey, Simo Vehmas, Martin Tweedale, and Rob Wilson.  This event was video recorded and over the next month we will highlight these videos on this blog.  Roughly four videos will be featured each week.

To download the full description of the symposium please click here.

With this video we begin the third part of the presentation by Simo Vehmas (The first part may be found here and the second here).  Simo’s presentation is titled “Preventing Disability: Nordic Perspectives” and it focuses on summarizing past and present attitudes towards eugenic practices in Nordic countries, principally Finland, with special attention paid to attitudes and ideas around eugenic practices of preventing disability.

Part 3

Highlights: the consequences of the distinction between analytic and continental philosophy for doing ethics in Europe, embarrassing statistical analysis of money saved from selective abortion, directed and coercive nature of prenatal genetic testing, strength of ideas of reproductive freedom and autonomy, critical assessment of Finns on “useless” philosophy, secret recipe for arousing passion in Finns.

A transcript follows the cut.

Going Underground and True Choice

[This is the twelfth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. For further context, please see the introductory post in the series, which can be found here; we’ll string together all posts in this series when we have most / all of them up, or you can search by the category “Modern Pursuit” to get those already posted.]

Here Anna Macquarrie from the CACL talks more openly about the history of eugenics and contemporary genetic testing. In Part 2, below the fold, there is some discussion of this, with Simo Vehmas resisting the linkage of eugenics with contemporary attitudes and practices, and some hearty discussion following from all–not everything can be heard here, but we’ve put what we could make out on the transcripts beneath the fold.

Is making the connection between past eugenic practices and contemporary practices, such as genetic testing for Down Syndrome, “playing the Nazi card”, as Simo suggests?

Going Underground and True Choice: Part 1

Note that there is no sound in the first 30-40 seconds of Part 1, which simply contains the title of the clip, the name of the speaker(s), and the location of the symposium, information that is provided in the beginning of this post.

The Modern Pursuit of Human Perfection

On October 23rd last year, the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living, sponsored a public dialogue at the University of Alberta called

The Modern Pursuit of Human Perfection
Defining Who is Worthy of Life

The event began with a panel of people who talked about their experiences with children, doctors, families, and disability. There were then several short commentaries, followed by some open discussion. The event was free and open to the public, and we have videocasts of all parts of the event to share.

Over the next month or so, we will put the videos of the public dialogue up on the What Sorts blog; each runs for 5-10 minutes or so. Today

Families and Memory — Free Public Symposium

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A Free Public Symposium on Eugenics and Family Life:
Past, Present & Future
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Friday, October 24, 2008, 8:30 am – 4:00pm
Edmonton Public Library, Stanley Milner Branch (Downtown)

This FREE PUBLIC SYMPOSIUM will centre on the stories and experiences of survivors of sterilization, institutionalization, and other aspects of our social structure that have excluded persons with real or perceived disabilities from family life

Planning on attending? Enrollment is limited! Please tell us!

Visit http://www.whatsorts.net and register today
(Register Here)

Get more details on the day beneath the fold.

1930s Drama Exposes Horrors of Forced Sterilization

Tomorrow's Children

Tomorrow’s Children is a 1934 drama that intends to make a bold statements about everything that is wrong with forced sterilization.

Thanks to the magic of YouTube and the passage of time this film is both available for viewing and in the public domain.

A New Zealand report on the cultural, ethical and spiritual aspects of pre-birth testing by Toi te Taiao: the Bioethics Council

some far reaching recommendations such as
Recommendation 9
There is insufficient cultural, ethical and spiritual reasons to prohibit the use of preimplantation
genetic diagnosis for sex selection for social reasons such as ‘family balancing’.

more hereTechnorati Tags: Genetic testing, preimplantation, gender, sex selection, ethics, New Zealand