January 27, 2003 (USA TODAY) -- Had enough human cloning nonsense? If you want something genuine to fret about, experts suggest considering what already is occurring at the local in vitro fertilization clinic.
Aided by advances in a variety of diagnostic screening technologies and the rapidly expanding knowledge of human genes, fertility experts are able to screen test-tube embryos for a wide variety of genetic diseases and create healthy babies.
Of course, that's a good thing. But the same progress could lead to screening embryos for characteristics that extend far beyond health. Sooner or later, the stork will be able to carry babies that were screened as embryos and selected for birth because they possess genetic profiles linked with traits such as intelligence, personality, a specific aptitude and physical beauty.
"We should forget about cloning. The reproductive issues we need to think about right now are tied to the genetic screening of embryos," says Gregory Stock, director of UCLA's Program on Medicine, Technology and Society. "We are beginning to take control of our own evolutionary future. We can quibble about what will occur first and when, but it is clear we will apply new knowledge and technology in any way that we think will contribute to our well-being."
The subject of designing children underscored the themes of The Storefront Genome conference Sunday at UCLA. The conference is the first of a series sponsored by UCLA's new Center for Society, the Individual and Genetics. The goal is to stimulate debate about the difficult bioethical issues that scientists, like errant paperboys, seem to be tossing at the public's doorstep.
When it comes to children, everyone knows that siblings can be quite varied in their personalities and appearance. Environment plays a strong role in shaping a person's life. But genes set the stage. Embryos are never created equal. Think of your own genetic makeup as the hand of cards you were dealt at conception. With each conception in a family comes a new shuffling of the deck and a new hand. That's partly why little Bobby sleeps through the night as a baby, always behaves and seems to love math, while brother Billy is colicky, never listens and already is the head of a gang in kindergarten.
But as scientists begin to learn how particular groups of genes and patterns of gene activity are associated with specific personalities and traits, parents will be able to use in vitro fertilization to create and screen embryos for desired attributes. Only the desirable embryos are implanted, and troublesome Billy is never born.
Sound creepy, or does it make you want to sign up? Either way, without an informed public debate, experts say, this could be happening within 10 years.
A USA TODAY/CNN/Gallup Poll shows that 88% of people oppose allowing parents to select the genetic traits of their children.
Congress is focused on human cloning and seems determined to tie it to embryonic stem cell research and -- rightly or wrongly -- abortion politics. Stem cells are derived from human embryos that are destroyed in the process.
Fertility clinics, meanwhile, are unregulated, and Congress appears to have no interest in regulating them, says Mark Rothstein, legal expert at the University of Louisville.
Advances on the horizon
Fertility clinics routinely create, genetically screen and destroy thousands of embryos a year to help parents have healthy babies. Designer babies are only a matter of more sophisticated screening tests.
The federally funded Human Genome Project, which is decoding the human genetic instruction manual, is revolutionizing the understanding of human disease and many behavioral traits. It has given birth to a dynamic field of population genetics in which the DNA of thousands of people can be analyzed for a wide variety of predispositions and characteristics.
Kari Stefansson, founder and president of deCODE Genetics in Reykjavik, Iceland, has pioneered a powerful new brand of population genetics. His company is analyzing DNA samples from 30,000 Icelanders. DeCODE has developed computer programs to mine the data for associations and patterns that help them track genes that play a role in diseases. They have found genes involved in 26 conditions.
"We can look at how variations in the genome travel together with different diseases," Stefansson says. The data produced patterns that led to genes involved with specific diseases. DeCODE also is looking for genes involved with longevity. Stefansson says the company is not working on genes associated with personality. But another company could in the near future.
Biotechnology and computing are converging in many ways, Stock says, including the ability to create pocket-sized "gene chips" that may soon read a person's entire genetic profile.
Meanwhile, fertility experts continue to improve the art of creating robust human embryos. As all of these technologies improve, Stock says, they will become cheaper and more accessible to the public. To ensure that the public isn't left with a scientific monster that no one knows how to handle, the public should soon decide how it wants to handle the potential to choose children's genes.
"The Human Genome Project is the Manhattan Project of biology. This time we need to get it right," says UCLA Chancellor Albert Carnesale, whose biotechnology initiative financed the center.
Too simple a notion
People have talked about creating designer babies since the arrival in 1978 of Louise Brown, the first baby born via in vitro fertilization, but debates have focused on adding genes for X or Y to enhance a child's potential. That notion is too simplistic, says Bonnie Steinbock, chairman of philosophy at the University at Albany, State University of New York.
"People may have the misunderstanding that a single gene controls either a disease or less plausibly a non-disease trait," she says. "You hear about 'the' breast cancer gene or 'the' gay gene. This is over-oversimplified and gives a false picture of the way genes work."
Individual genes for superior intelligence or a bubbly personality probably do not exist as they do for some diseases. Instead, genes work together in complex and mysterious ways to influence behavior. That influence is further complicated by exposure to the environment, whether that is the womb or the home, she says.
Advancing from single-gene simplicity, scientists are now discovering specific patterns of gene expression associated with diseases. Last month, scientists at the Dana Farber Cancer Institute reported that the potential of a tumor to spread is associated with a specific gene-expression pattern, which basically consists of genes that are active against the background of genes that are inactive. Can gene-expression patterns for behavior be far behind?
Gene-expression profiles are identifiable through a technology called the gene chip, a tiny device that can read information on thousands of genes. Gene-expression profiles from the chips can then be analyzed by computer. Scientists can compare known expression profiles to DNA from a person or even an embryo. The information could be adapted for genetic screening tests.
Last February, fertility specialists at Reproductive Genetics Institute and IVF Illinois Inc. in Chicago reported screening embryos at high risk for inheriting a rare genetic mutation that causes early-onset Alzheimer's disease. They prepared an individualized test based on the family's mutation.
Next they used a procedure called pre-implantation genetic diagnosis to test the DNA of embryos for the mutation. They were able to select an embryo that was unaffected and implant it in the mother's womb. This type of diagnosis is performed for more than 50 genetic conditions.
Controversial technologies
The diagnosis also is performed for sex selection of embryos in which males are at risk for carrying diseases such as Duchenne muscular dystrophy. But what began as a medical procedure is now performed for "family balancing."
The Pew Charitable Trusts sponsored a survey of 1,211 people in December that found two-thirds of respondents approve of using reproductive genetic testing to help parents have a baby free of a serious genetic disease. But more than 70% said they disapprove of using the same technologies to identify or select traits such as strength or intelligence.
Steinbock is more skeptical that designer babies are on the horizon. She says IVF procedures are invasive and involve powerful drugs to make women ovulate. She doesn't believe that parents will find the effort and cost worth "an extra 2 inches of height" for a baby.
But Stock and others point out that 35,000 babies a year are born by IVF today and that couples already are asking for such things.
Says Steinbock: "What we are legitimately concerned about are the people who want to do this. There are parents who want the perfect child. Perhaps there are more stage mothers and football fathers than we would like to think. But I am very skeptical that people will be lining up."
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