Genetic Screening: Controlling Heredity

ARCHIVAL (CBS, CBS THIS MORNING, 2-22-12):
ERICA HILL: The new test that reveals birth abnormalities at a much earlier stage…

NARRATION: Every new advance in prenatal screening…

ARCHIVAL (CBS, 60 MINUTES, 6-5-15):
NORAH O’DONNELL: Diseases are being literally stopped in their tracks.

NARRATION: …brings difficult questions.

ARCHIVAL (12-11-98):
WOMAN: Red identifies the chromosome 21.

DR. WENDY CHUNG: What’s normal or abnormal? Where do you stop?

ARCHIVAL (CBS, CBS THIS MORNING, 2-22-12):
GAYLE KING: Do you think that this could lead to a world without Down Syndrome kids?

REBECCA COKLEY: Oh, this is eugenics—weeding out specific communities that we deem as fundamentally unfit.

NARRATION: 100 years ago, eugenics was the law—part of a plan to stop the so-called genetically inferior from having children.

CARL ZIMMER: Tens of thousands of people were sterilized as a result of these laws. We need to really understand how that happened, and we shouldn’t let it happen again.

GENETIC SCREENING: CONTROLLING HEREDITY

REBECCA COKLEY (SPEAKING TO HER SON, WHILE PREPARING BREAKFAST): Jackson, where’s your bowl?

NARRATION: In many ways, Rebecca and Patrick Cokley live the American dream.

REBECCA COKLEY (DISABILITY RIGHTS ACTIVIST): Jackson is seven. Kaya is four, and the last addition is Kendrick. It’s never boring. We have a great life. I had the pleasure of growing up in a very strong community of little people. I was literally born and raised into the disability rights movement.

NARRATION: Rebecca is the second generation of her family with achondroplasia, the most common form of dwarfism, and is an advocate for people with disabilities.

ARCHIVAL (C-SPAN, 10-28-17):
REBECCA COKLEY: We need fair pay; we need family leave; our issues are fundamentally women’s issues.

REBECCA COKLEY: I was in the White House for two and a half years as President Obama’s Chief Diversity Officer. It was an incredible experience.

NARRATION: In August of 2017, she published an editorial about genetic engineering and prenatal diagnosis.

REBECCA COKLEY: So as the testing becomes more and more available, an obvious fear is that people will abort kids like that cute girl riding the scooter outside because of what they don’t know… that my children may end up being the last generation of people like them. I think we can look back historically, and it’s scary.

ARCHIVAL (EUGENICS SOCIETY FILM “HEREDITY IN MAN,” 1937):
MAN: What is the bearing of the laws of heredity upon human affairs? Eugenics provides the answer.

NARRATION: The idea that society would try to eliminate groups of people based on real—or perceived—disability is not far fetched.

CARL ZIMMER (AUTHOR, “SHE HAS HER MOTHER’S LAUGH: THE POWERS, PERVERSIONS, AND POTENTIAL OF HEREDITY”): One of the terrible things about eugenics was that it basically declared certain people had lives that were not worth living.

NARRATION: In the early 1900s, the American eugenics movement arose as a response to increased immigration and rapid social change.

ARCHIVAL (HISTORIC FILMS, CIRCA 1910 IMAGERY):
MAN: New York City was now a restless and thriving metropolis.

CARL ZIMMER: People are moving from farms to cities, and there’s a lot of poverty and crime. So, a number of scientists became convinced that this was the result of hereditary feeble-mindedness, and you could actually improve the human race by controlling their heredity. It was completely wrong, but it fit with longstanding prejudices that people had. They would hand out awards at state fairs to families that represented the best in American society and encourage them to have kids. On the flip side, they started pushing for laws allowing states to sterilize people that they judged unfit.

NARRATION: Eugenics programs were set up in more than 30 states.

CARL ZIMMER: They would draw these elaborate family trees. And they would note whether these people had a normal intelligence. And then say, “Ah-ha, you see? There are lots of people in this family who are feeble-minded.”

NARRATION: Forced sterilization was even approved by the Supreme Court, in the 1927 case Buck v. Bell, dramatized in the film “Against Her Will."

ARCHIVAL (“AGAINST HER WILL: THE CARRIE BUCK STORY,” 1994):
MAN: I believe that preventing Carrie Buck from childbearing is our duty.

NARRATION: In the late 1920s, support for eugenics began to wane, as new research undermined its basic ideas about heredity.

ARCHIVAL:
ADOLF HITLER: Sieg Heil! Sieg Heil!

CARL ZIMMER: And then in World War II, Nazis adopted American eugenics. And they said, “Well, not only are we going to sterilize people, we’re going to kill them too.” So, after World War II, eugenics as a movement completely collapsed.

NARRATION: Despite her fears, Rebecca Cokley says reproductive choices must always be personal. And that it’s important to remember eugenics laws prevented people with disabilities from making these kinds of decisions for themselves.

REBECCA COKLEY: As a woman who is very pro-choice and believes that that’s a fundamental right, it is hard to talk about the fact that people are going to abort kids like me. That’s why having conversations like this is so important, to get out there to show people that we have a life worth living and a life with dignity.

NARRATION: Genetic screening was not always so complicated. When it began, in the early 1970s, it was seen as a nearly miraculous way to prevent horrible suffering.

ARCHIVAL (HOME FOOTAGE, 1990s):
SHARI UNGERLEIDER: There you go…

SHARI UNGERLEIDER (JEWISH GENETIC DISEASE CONSORTIUM): It was really scary because we knew that there was something going on.

NARRATION: Shari and Jeff Ungerleider’s first child, Evan, had Tay-Sachs, a fatal genetic disease. Children like Evan appear normal at birth, but soon deteriorate.

SHARI UNGERLEIDER: It’s horrible. Children go blind and deaf, they can’t move on their own. They can’t express what they’re feeling. On a good day, he would have two dozen seizures. There was nothing that we could do for Evan except keeping him happy, out of pain, not suffering.

ARCHIVAL (HOME FOOTAGE, 1990s):
FAMILY: Happy birthday dear Evan!

SHARI UNGERLEIDER: There’s nothing worse than knowing that your child is going to die before their fifth birthday.

ARCHIVAL (WCBS NEWS, 1970s):
REPORTER: A family’s chances of having a Tay-Sachs child are greatest if they are of Jewish heritage.

NARRATION: Tay-Sachs is caused by a mutation in a single gene. In 1971, a test was developed to identify Tay-Sachs carriers.

DR. RONALD WAPNER (COLUMBIA UNIVERSITY): If both parents carried the gene, there’d be a one-in-four chance that the fetus would have this disorder. The Jewish population said, “Let’s start a screening program.”

ARCHIVAL (NATIONAL TAY-SACHS & ALLIED DISEASES ASSOCIATION PSA, 1972):
BARBARA STREISAND: A simple blood test provides a way to prevent this tragedy. A Tay-Sachs testing will be held in your community soon.

RONALD WAPNER: At synagogues, at Jewish Community Centers, they just set up tables, drew blood… identified the carriers.

NARRATION: After Evan, Shari and Jeff Ungerleider terminated one Tay-Sachs pregnancy and had three healthy children. Shari is now a speaker and advocate for screening.

SHARI UNGERLEIDER: I believe knowledge is power. I loved Evan more than anything. I mean, he was my first child. But if there was any way I could have spared him, I would have.

NARRATION: Ron Wapner is a geneticist and obstetrician who has been practicing since the 1970s. He watched Tay-Sachs become the model for a whole new kind of preventive medicine.

RONALD WAPNER: What was radical was that the community decided to do something about a genetic disease that was in their population. They almost wiped out the disease, and nowadays it’s exceedingly rare to see a child with Tay-Sachs disease.

NARRATION: But now, some 40 years later, he says advances in technology…

RONALD WAPNER (IN LAB): What we’re doing is sequencing amniotic fluid samples.

NARRATION: …have made it easy to screen potential carriers, fetuses, and even embryos for hundreds of genetic conditions.

RONALD WAPNER: Everyone agrees, that if it’s a severe and profound disorder, we should screen for it. But the discussion that we need to have is… where is our technology taking us?

ARCHIVAL (ABC, 10-18-11):
DIANE SAWYER: A new option, a simple blood test.

NARRATION: The newest test, called cell free DNA, is so easy, it’s routinely advertised to pregnant women.

DR. WENDY CHUNG (COLUMBIA UNIVERSITY): It’s actually the most widely adopted genetic test that I’ve seen.

NARRATION: Genetics researcher Wendy Chung has seen screening spare families from horrible suffering.

WENDY CHUNG (WITH PATIENT): 31.3 kilos, OK you can step out now…

NARRATION: But its rapid expansion has her wondering.

WENDY CHUNG (TO MAGGIE): OK, sit up for me for just a second?

WENDY CHUNG: I’ve got a lot of patients that have many of the genetic disorders that we could identify through the cell-free DNA.

MAGGIE (PATIENT): My heart works very hard.

WENDY CHUNG (TO MAGGIE): Yes it does.

MAGGIE: It needs to knowing that I have Turner Syndrome.

WENDY CHUNG: Girls with Turner Syndrome, some of them will have structural differences in the way their heart is formed and differences in the way their ovaries work.

MAGGIE: I mean sure there’s been ups and downs, but that’s normal.

WENDY CHUNG (TO MAGGIE): You eat a lot of chips?

MAGGIE: I’m sort of addicted to them.

WENDY CHEUNG: They’re perfectly healthy. Who’s to say that that’s a disease? It’s a difference, sure. Is it something that you can still be happy, well-adjusted, productive member of our community? Of course.

WENDY CHUNG (TO MAGGIE): Hi-five.

NARRATION: When it began, screening was only for those with known risk. Now, Dr. Chung worries about offering more tests to more people, without first educating them about what the results really mean, and what various conditions entail.

WENDY CHUNG: The concern is they buy into that idea that they need to do as much as they can to ensure a healthy child. When there’s a genetic problem with their fetus, the knee-jerk reaction is, “It started with Tay-Sachs so it must be the same.” And so, automatically they start thinking about ending that pregnancy, because if it weren’t bad, why would you have tested me for this in the first place?

NARRATION: As we consider our options—as individuals and as a society—there is also the shadow of history.

RONALD WAPNER: No matter what we do, the one line we should never cross is this always has to be voluntary. It should never be a mandate that you have to have genetic screening or testing.

CARL ZIMMER: We have to be incredibly on our guard that we’re not simply looking at people and saying, “I’ve decided your life is not worth living.” This has happened before, and, as our science gets more powerful, we shouldn’t let it happen again.

(END)