A Baby, Please. Blond, Freckles -- Hold the Colic

Laboratory Techniques That Screen for Diseases in Embryos Are Now Being Offered to Create Designer Children

By GAUTAM NAIK

Want a daughter with blond hair, green eyes and pale skin?

A Los Angeles clinic says it will soon help couples select both gender and physical traits in a baby when they undergo a form of fertility treatment. The clinic, Fertility Institutes, says it has received "half a dozen" requests for the service, which is based on a procedure called pre-implantation genetic diagnosis, or PGD.

While PGD has long been used for the medical purpose of averting life-threatening diseases in children, the science behind it has quietly progressed to the point that it could potentially be used to create designer babies. It isn't clear that Fertility Institutes can yet deliver on its claims of trait selection. But the growth of PGD, unfettered by any state or federal regulations in the U.S., has accelerated genetic knowledge swiftly enough that pre-selecting cosmetic traits in a baby is no longer the stuff of science fiction.

"It's technically feasible and it can be done," says Mark Hughes, a pioneer of the PGD process and director of Genesis Genetics Institute, a large fertility laboratory in Detroit. However, he adds that "no legitimate lab would get into it and, if they did, they'd be ostracized."

But Fertility Institutes disagrees. "This is cosmetic medicine," says Jeff Steinberg, director of the clinic that is advertising gender and physical trait selection on its Web site. "Others are frightened by the criticism but we have no problems with it."

PGD is a technique whereby a three-day-old embryo, consisting of about six cells, is tested in a lab to see if it carries a particular genetic disease. Embryos free of that disease are implanted in the mother's womb. Introduced in the 1990s, it has allowed thousands of parents to avoid passing on deadly disorders to their children.

But PGD is starting to be used to target less-serious disorders or certain characteristics -- such as a baby's gender -- that aren't medical conditions. The next controversial step is to select physical traits for cosmetic reasons.

"If we're going to produce children who are claimed to be superior because of their particular genes, we risk introducing new sources of discrimination" in society, says Marcy Darnovsky, associate executive director of the Center for Genetics and Society, a nonprofit public interest group in Oakland, Calif. If people use the method to select babies who are more likely to be tall, the thinking goes, then people could effectively be enacting their biases against short people.

In a recent U.S. survey of 999 people who sought genetic counseling, a majority said they supported prenatal genetic tests for the elimination of certain serious diseases. The survey found that 56% supported using them to counter blindness and 75% for mental retardation.

More provocatively, about 10% of respondents said they would want genetic testing for athletic ability, while another 10% voted for improved height. Nearly 13% backed the approach to select for superior intelligence, according to the survey conducted by researchers at the New York University School of Medicine.

There are significant hurdles to any form of genetic enhancement. Most human traits are controlled by multiple genetic factors, and knowledge about their complex workings, though accelerating, is incomplete. And traits such as athleticism and intelligence are affected not just by DNA, but by environmental factors that cannot be controlled in a lab.

While many countries have banned the use of PGD for gender selection, it is permitted in the U.S. In 2006, a survey by the Genetics and Public Policy Center at Johns Hopkins University found that 42% of 137 PGD clinics offered a gender-selection service.

The science of PGD has steadily expanded its scope, often in contentious ways. Embryo screening, for example, is sometimes used to create a genetically matched "savior sibling" -- a younger sister or brother whose healthy cells can be harvested to treat an older sibling with a serious illness.

It also is increasingly used to weed out embryos at risk of genetic diseases -- such as breast cancer -- that could be treated, or that might not strike a person later in life. In 2007, the Bridge Centre fertility clinic in London screened embryos so that a baby wouldn't suffer from a serious squint that afflicted the father.

Instead of avoiding some conditions, the technique also may have been used to select an embryo likely to have the same disease or disability, such as deafness, that affects the parents. The Johns Hopkins survey found that 3% of PGD clinics had provided this service, sometimes described as "negative enhancement." Groups who support this approach argue, for example, that a deaf child born to a deaf couple is better suited to participating in the parents' shared culture. So far, however, no single clinic has been publicly identified as offering this service.

Like several genetic diseases, cosmetic traits are correlated with a large number of DNA variations or markers -- known as single nucleotide polymorphisms, or SNPs -- that work in combination. A new device called the microarray, a small chip coated with DNA sequences, can simultaneously analyze many more spots on the chromosomes.

In October 2007, scientists from deCode Genetics of Iceland published a paper in Nature Genetics pinpointing various SNPs that influence skin, eye and hair color, based on samples taken from people in Iceland and the Netherlands. Along with related genes discovered earlier, "the variants described in this report enable prediction of pigmentation traits based upon an individual's DNA," the company said. Such data, the researchers said, could be useful for teasing out the biology of skin and eye disease and for forensic DNA analysis.

Kari Stefansson, chief executive of deCode, points out that such a test will only provide a certain level of probability that a child will have blond hair or green eyes, not an absolute guarantee. He says: "I vehemently oppose the use of these discoveries for tailor-making children." In the long run, he adds, such a practice would "decrease human diversity, and that's dangerous."

In theory, these data could be used to analyze the DNA of an embryo and determine whether it was more likely to give rise to a baby of a particular hair, skin or eye tint. (The test won't work on other ethnicities such as Asians or Africans because key pigmentation markers for those groups haven't yet been identified.)

For trait selection, a big hurdle is getting enough useful DNA material from the embryo. In a typical PGD procedure, a single cell is removed from a six-cell embryo and tested for the relevant genes or SNPs. It's relatively easy to check and eliminate diseases such as cystic fibrosis that are linked to a single malfunctioning gene. But to read the larger number of SNP markers associated with complex ailments such as diabetes, or traits like hair color, there often isn't enough high-quality genetic material.

William Kearns, a medical geneticist and director of the Shady Grove Center for Preimplantation Genetics in Rockville, Md., says he has made headway in cracking the problem. In a presentation made at a November meeting of the American Society of Human Genetics in Philadelphia, he described how he had managed to amplify the DNA available from a single embryonic cell to identify complex diseases and also certain physical traits.

Of 42 embryos tested, Dr. Kearns said he had enough data to identify SNPs that relate to northern European skin, hair and eye pigmentation in 80% of the samples. (A patent for Dr. Kearn's technique is pending; the test data are unpublished and have yet to be reviewed by other scientists.)

Dr. Kearns' talk attracted the attention of Dr. Steinberg, the head of Fertility Institutes, which already offers PGD for gender selection. The clinic had hoped to collaborate with Dr. Kearns to offer trait selection as well. In December, the clinic's Web site announced that couples who signed up for embryo screening would soon be able to make "a pre-selected choice of gender, eye color, hair color and complexion, along with screening for potentially lethal diseases."

Dr. Kearns says he is firmly against the idea of using PGD to select nonmedical traits. He plans to offer his PGD amplification technique to fertility clinics for medical purposes such as screening for complex disorders, but won't let it be used for physical trait selection. "I'm not going to do designer babies," says Dr. Kearns. "I won't sell my soul for a dollar." A spokeswoman for Dr. Steinberg said: "The relationship between them is very amicable, and this center looks forward to working with Dr. Kearns."

For trait selection, Dr. Steinberg is now betting on a new approach for screening embryos. It involves taking cells from an embryo at day five of its development, compared with typical PGD, which uses cells from day three. The method potentially allows more cells to be obtained, leading to a more reliable diagnosis of the embryo.

Trait selection in babies "is a service," says Dr. Steinberg. "We intend to offer it soon."

Write to Gautam Naik at gautam.naik@wsj.com

Sudbury, MA (February 16, 2008) -- Massachusetts is sending two new representatives to the nation's Capitol this March, but the young ambassadors aren't politicians. 9 year-old Andy Treviño and 4 year-old Sofía Treviño of Sudbury will represent the state's children treated at Children's Hospital Boston as the Massachusetts Champion Childs at a "Champions Across America Celebration" in Washington, DC and Florida.  The celebration honors one remarkable childs from every state who have triumphed despite severe medical challenges. 

The Trevino's will join other child ambassadors from every state as part of the Children's Miracle Network program, Champions Across America presented by Walmart and Sam's Club. The program brings attention to the important work being done at children's hospitals by honoring remarkable children like Andy and Sofía.

Andy was born with Primary Immune Deficiency, an extremely rare genetic mutation that caused his immune system to fail. Since Andy's birth they'd consulted 70 doctors and spent 375 days in the hospital in their native Mexico. They'd run out of options and in September 2000, his parents Andres and Paulina Treviño packed two suitcases, a stroller, and a desperately sick 16-month-old, Andy, and flew to Boston. They directed the cab driver to take them straight to Children's Hospital Boston.

Children's Hospital Boston Immunology, gastroenterology and other specialists struggled to bring Andy's constant, life-threatening infections under control. Within months, Jordan Orange, MD, PhD, an immuno-genetics specialist discovered Andy's problem: a rare NEMO mutation, affecting only boys, was suppressing the immune-response signal. Andy's body was defenseless against infection.

Andy's only hope for a cure was a stem cell transplant. Success depended on a genetically matched donor, and the best matched donor for Andy would be a sibling-- his sister, Sofíia.

Andy endured immune-destroying chemotherapy before receiving the transplant. Within weeks, his immune system regenerated with healthy, normal cells--Sofia's gift.  Andy was cured. Sofíia Treviño's name in anagram spells out "one fit savior", exactly what she represented to her brother. Today, Andy is a healthy third-grader with many friends.

The Treviño's and fellow champions will travel for one week - first to Florida for the Children's Miracle Network Celebration event at Walt Disney World Resort, and then to Washington D.C. Andy will visit Capitol Hill to share his story of medical victory, representing the 17 million children treated at Children's Miracle Network hospitals each year throughout the United States.

Since 1987, Children's Miracle Network and Walmart and Sam's Club associates, customers and members have worked together to help children by raising and contributing more than $460 million for children's hospitals nationwide.

"We're grateful to Walmart and Sam's Club associates and customers for contributing more than $5 million to Children's Hospital Boston since 2002," said Carola Cadley, Children's Hospital Trust Associate Vice President of corporate development and marketing.

"Over the past two decades, Children's Miracle Network, its hospitals and especially the children treated have found a very special place in the hearts of Walmart and Sam's Club associates," said Margaret McKenna, president of the Wal-Mart Foundation. "Our support for Champions Across America builds on the emotional connection our associates have with the children cared for by these hospitals."

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NOTE:  PHOTOS AND B-ROLL VIDEO of Andy's trip to DC and Disney will be available.  Contact Amy Sweeney for details.

Children's Hospital Boston, an internationally renowned center for medical research and treatment founded in 1869, is home to one of the world's largest research enterprises, generating discoveries that benefit patients worldwide. Recognized for its many "research firsts," Children's is one of the only pediatric hospitals nationwide that focuses on pairing world-class research with clinical resources to provide top therapies to treat and cure children. These scientific advances don't help only children; they also have far-reaching implications for treating adults. For more information, visit www.childrenshospital.org.

About Children's Miracle Network

Children's Miracle Network is a non-profit organization dedicated to saving and improving the lives of children by raising funds for children's hospitals. Each year, the 170 Children's Miracle Network hospitals provide the finest medical care, life-saving research and preventative education to help millions of kids overcome diseases and injuries of every kind. To learn more go to www.ChildrensMiracleNetwork.org.

About Philanthropy at Wal-Mart Stores, Inc.

Wal-Mart Stores, Inc. (NYSE: WMT) and the Wal-Mart Foundation are proud to support the charitable causes that are important to customers and associates in their own neighborhoods. Through its philanthropic programs and partnerships, the Wal-Mart Foundation supports initiatives focused on creating opportunities in education, workforce development, environmental sustainability, and health and wellness. In 2007, Walmart, Sam's Club and the Wal-Mart Foundation gave $296 million to communities across the United States. To learn more, visit www.walmartfoundation.org.

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Transfer of Mother's Cells Molds Baby's Immunity

By AMANDA SCHAFFER
Published: February 2, 2009

Researchers have long wondered how pregnant women might shape their fetuses' development -- by protecting them against later disease, perhaps, or instilling an appreciation of Mozart.

Now a group in California has discovered a surprising new mechanism by which women train their fetuses' budding immune systems: the mother's cells slip across the placenta, enter the fetus's body and teach it to treat these cells as its own.

A crucial task of the developing immune system is to learn to distinguish between foreign substances and the self. It is tricky: the system must respond to outside threats but not overreact to harmless stimuli or the body's own tissues.

The new findings show "how Mom is helping to tune that whole system early on," said William J. Burlingham, an immunologist at the University of Wisconsin, who is not connected with the research. "It's a major advance, very new and very exciting."

The work could have relevance to research on topics as diverse as organ transplantation, mother-to-child transmission of H.I.V. and autoimmune disorders like Type 1 diabetes.

Link