I would like to see a really aggressive push to develop a test for hundreds of genetic diseases so that parents could be informed before they started to have children as to the dangers that face them. And I think it's within our grasp, now that they've mapped the human genome. They're horrible, horrible, horrible diseases, and if there's any way that you can be tested for a whole host of them and not have them affect a child, I think it's something that we have to focus on.
--Tim Lord, father of a child with Tay-Sachs, in NOVA: "Cracking the Code of Life," 2001
Increasingly, we are going to see the disabled as defective products. I can see a day coming very soon ... when people will look at someone walking down the street and say, "Why did that young person have a cleft palate? Why is that person disabled? Obviously she comes from a class that couldn't afford genetic screening or genetic engineering."
--Jeremy Rifkin, in The Secret of Life by Joseph Levine and David Suzuki, 1998
The use of Tay-Sachs prenatal testing is a very merciful thing. I think things become much more tricky when you talk about issues like cystic fibrosis, chances for heart disease in middle age, conditions like dwarfism, various kinds of blindness and deafness. There I think it's genuinely hard to figure out whether or not you should prevent a birth.
--Philip Kitcher, author of The Lives To Come, in an interview with NOVA Online, 2001
An early-stage embryo with only eight cells can now be tested for genes like the one that causes cystic fibrosis.
|
|
Riley Demanche was born with cystic fibrosis. In this video, his mother talks about the son she cherishes.
View in
QuickTime or RealPlayer |
|
|
Tim Lord's son, as well as his niece, suffered from Tay-Sachs. Learn about the disease in this video.
View in
QuickTime or RealPlayer
A screening program for Tay-Sachs lowered the incidence of the disease among the Jewish community in Brooklyn by 90 percent between 1970 and 1992.
|
|
|
