The Upside and Downside of Screening Embryos

A controversial practice may make birth more selective, but also avoid tragedy.

ByCourtney Hutchison, Joseph Brownstein, Jeremy Hubbard and Kinga Janik
October 20, 2009, 11:26 AM

Oct. 21, 2009— -- Genetic screening of embryos, sperm and eggs has been tied to the worst aspects of eugenics, but a new case study in one of the nation's leading medical journals shows some benefits may come from genetic analysis of donors.

The study documents the case of a then-23-year-old sperm donor whose donations in 1990 and 1991 led to the birth of 22 known children. Recently, however, it has also been discovered through gene testing that he has hypertrophic cardiomyopathy (HCM), a genetic heart condition that can lead to heart failure and sudden death, among other problems, and a problem some of his children now also have.

"This is the first time a genetic disease has been documented this way," said Dr. Barry Maron, a cardiologist with the Minnesota Heart Institute Foundation. "It's supposed to make the point that this is an invisible risk. Could it happen again? Of course. That's the point of the whole exercise."

While the FDA requires sperm donors to be screened for multiple conditions, these tests are aimed at preventing the transmission of infectious diseases such as AIDs, and largely do not address genetically transmitted diseases like the genetic heart defect that afflicted this sperm donor's offspring.

The current FDA regulations require the testing for genetic diseases like cystic fibrosis, sickle cell anemia, and Tay-Sach's, but genetic heart problems are not included in the screening.

"The FDA had not paid much attention to the transmission of genetic diseases," Maron said. "The emphasis has been on transmission of infectious diseases."

The anonymous sperm donor's screening did not pick up his heart condition, and of his 24 children (two from his wife, the rest from donation), nine have the genetic mutation responsible for HCM. One has functional limitations, chest pain and fatigue because of this problem; another has palpitations; and one died of progressive heart failure at the age of 2, while awaiting a transplant.

The case study appears in the newest issue of the Journal of the American Medical Association.

In a related editorial in the journal, Judith Daar of Whittier Law School in Costa Mesa, Calif., and Dr. Robert Brzyski of the University of Texas Health Science Center at San Antonio say the study shows the need for increased gene screening and counseling, although they note that this is not foolproof when it comes to the health of potential offspring.

"Geneticists caution, however, that prospective parents should be counseled about the limitations of genetic testing and its relationship to long-term offspring health," they wrote. "Providing recipients a clean genetic bill of health about a chosen donor can lead to a false sense of confidence about the risk of illness their child might face. A significant proportion of some genetic conditions ... arise from [new] mutations."

Designer Babies: An Inexact Science

While gene screening to control all aspects of a new baby has not come around yet, mothers-to-be have begun screening at a more rudimentary level. As the newest investigation by "Nightline" has shown, some women are already selecting men who resemble celebrities.

But with simply looking on the outside still an inexact science, some are wary that mothers who want a child have less-than-noble reasons for wanting a look into a potential sperm donor's genes.

As "Nightline" asks, what if you could "birth" it like Beckham?

In other words, what if you could deliver a baby boy who'd grow up with the chiseled good looks of the international soccer star David Beckham? Or maybe you'd prefer offspring with the matinee idol visage of Ben Affleck? Or a baby boy who'll one day resemble Duane "The Rock" Johnson?

Celebrity worship, it seems, has gone in utero. No longer is it enough to name your baby after your favorite star. With the help of the California Cryobank fertility clinic in Los Angeles, your child might actually look like that star.

"It can be the shape of the eyes, the nose, the mouth, any specific feature," said Scott Brown, director of communications at California Cryobank. "It can be the shape of the head. It can be the complexion. It can even be the hairstyle because you're talking about [what] someone looks like. That's what we're going for."

It's a service that's bound to cause confusion over the question, "Who's your daddy?"

At California Cryobank, which has been in business for more than 30 years and says it accepts only 1 percent of sperm-donor applicants, members of the staff sift through their long list of anonymous sperm donors. Then they vote to decide which of them are dead ringers for movie stars and athletes. Would-be parents can then pick which celeb they'd like their baby to resemble.

"Right now, the top guys on our list are Paul Walker, who was in 'The Fast and the Furious.' Ben Affleck is very popular. Scott Caan is popular," Brown told "Nightline." "Brett Favre is actually pretty popular. Jeremy Shockey was in the top 10 the last time I checked. It's a pretty wide range of guys."

He also mentioned Greg Grunberg of the TV show "Heroes" among the most popular picks.

Desire for celebrity look-alike sperm may seem superficial, but before you write off the idea, meet 33-year-old Alice Crisci, the California Cryobank client behind it.

"It humanizes the entire experience," she said. "It even brings a little levity to an overwhelming, emotional scary time in a woman's life."

Diagnosed with an aggressive form of breast cancer at just 31, Crisci would lose her breasts and hair and feared that she would lose her chance at motherhood.

Breast Cancer Diagnosis Brings Woman to Freeze Embryos

Before Crisci underwent a mastectomy in April 2008, she decided to have her embryos frozen. She said she spent around $15,000 to $20,000 in the process.

In the seven days before she began her egg retrieval, she combed through hundreds of potential donors, examining their profiles and nitpicking every last detail to decide who would help create the best baby. But the prospect of picking a faceless donor out of a catalog was overwhelming.

"Typically, clients start with the Web site and they do a search. They'd go through the ethnicity they were looking for, height, weight, eye color, hair color, blood type. You can look at religions, scholastic background, profession," Brown said. "It was all designed to get you as close to the donor without showing you a picture or revealing his true identity because it's an anonymous donor program."

Crisci -- who now runs a nonprofit organization, My Vision, that helps women with breast cancer deal with fertility preservation questions -- was able to narrow it down to her favorites based on things like the donor's height, weight, profession and education. But when she still had trouble deciding how to pick one donor off her short list, Brown and his team came up with an idea for putting "faces" on the anonymous potential fathers she selected.

"One of the things we tried to do was sit down and create lists of celebrities that looked like the donors that Alice had narrowed her choices down to," he said. "It worked really well. She was really happy with it, and it was really helpful in making that decision."

Brown said that was the genesis of the celebrity look-alike service. Since then, it's become the latest trend in designer babies. California Cryobank says its Web site traffic is up some 600 percent in the weeks since the service launched.

But many aren't happy about it. Daniel Sulmasy, a bioethicist at the University of Chicago, likens the celebrity look-alike service to selective breeding -- shopping at the supermarket for the perfect child.

"They're not the only ones who do this sort of thing. In New York City, there's a place that specializes in Scandinavian sperm and they give the parents a card when the child is born that says 'Congratulations, it's a Viking,'" Sulmasy said. "This sort of stuff, while it seems funny, really ought to make us very frightened as we select people who have blond hair, blue eyes, are smarter and taller."

Fertility clinics have long recruited donors based on brains and brawn. But when they concentrate on beauty, like how much the offspring might look like a handsome actor, Sulmasy said there are serious repercussions.

"One of the hidden ethical issues within this approach to genetic engineering is that the people who are already well off, who are wealthy, are going to get the sperm that are going to be more perfect, have the children that are stronger, smarter, faster, more beautiful and be even more advantaged in society -- while the poor, who are already disadvantaged ... have less access to this kind of technology," Sulmasy said.

"We all know that people within our society, people who are better looking, are more likely to get jobs and be better advantaged within society," Sulmasy added. "The gap between the rich and the poor will only grow greater the more we pursue this kind of avenue."

And Sulmasy wonders what should happen if your baby doesn't end up looking like your favorite movie star?

"Maybe the child is supposed to look like Harrison Ford," he said, "and if they come out not looking as someone quite as handsome as Harrison Ford, what does that do to the relationship between the parent and the child? Are they terribly disappointed because it's not perfect? ... Genetics is, even with something like this, a bit of a lottery."

'McLovin,' Steve Urkel, Jon Gosselin All Sperm Donor Look-Alikes

Brown said there are no guarantees.

"We're not promising that your child is going to look like these celebrities. These celebrities' children don't always look like them," he said. "Genetics is a tricky business and all we do is try to humanize and personalize the process and make it as easy for our clients as possible."

The Cryobank is quick to point out that the service is not entirely superficial. Not everyone on their list of donor look-alikes is a hunky leading man.

Remember Christopher Mintz-Plasse, who played the dork "McLovin" in the hit comedy "Superbad"? There's a donor who looks like him. There's also a Steve Urkel. And a Jon Gosselin, too.

"I know there are going to be people out there who think they're trying to make designer babies or trying to do this or that. You should leave it up to God or adopt. Those people don't get it. And I hope they never get it," Crisci said. "And if they do, I hope it's because they know somebody that went through what I went through or because they went through it themselves."

Crisci's embryos remain frozen. But she narrowed her celebrity look-alikes down to one man who actually resembles three stars. She's been told he has a combination of Oscar de la Hoya's complexion, David Cassidy's nose, and the lips and eyes of Freddie Prinze Jr.; a real Hollywood hybrid in the making.

"When I heard him say Freddie Prinze Jr., I actually laughed and said, 'but not his eyebrows, right?'" she said. "It definitely pleases me. Now that they have the entire tool up and running, I probably would have looked for Joey Lawrence because he was my crush since 'Blossom' days."

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