Articles on designer babies

Consumers desire more genetic testing, but not designer babies

Published: Monday, January 26, 2009 - 11:09 in Health & Medicine

A new study by researchers at NYU Langone Medical Center found a high desire for additional genetic testing among consumers for life altering and threatening medical conditions including mental retardation, blindness, deafness, cancer, heart disease, dwarfism and shortened lifespan from death by 5 years of age. Consumers, however, are less interested in prenatal genetic testing for traits including tall stature, superior athletic ability and superior intelligence. "Our research has discovered that although the media portrays a desire for 'designer babies', this does not appear to be true among consumers of genetic testing services," said Feighanne Hathaway, MS CGC, a certified genetic counselor at the NYU Cancer Institute. The article entitled, "Consumers' Desire towards Current and Prospective Reproductive Genetic Testing" published online early by the Journal of Genetic Counseling finds that consumers desire more genetic testing than what is currently offered but their selection of tests have limits on enhancements.

Prior to their initial visit with a genetic counselor at NYU's Human Genetics Program, 999 patients completed a one-page, 10 question categorical survey to assess their attitude towards reproductive genetic testing between July 2006 and February 2007. These consumers were asked to indicate traits and conditions for which they would choose reproductive genetic testing by circling answers from a list of thirteen that included both diseases and enhancements.

The study found that the majority of respondents would elect for the screening of the following conditions: mental retardation (75%), deafness (54%), blindness (56%), heart disease (52%), and cancer (51%). The results indicate that less than half of population (49.3%) would choose testing for a condition that resulted in death by 5 years of age, whereas even less parents (only 41.1%, 24.9%, and 19%) would choose testing for conditions that results in death by 20, 40, and 50 years of age, respectively. Only a minority of respondents would want genetic testing for enhancements such as athletic ability (10 %) or superior intelligence (12.6%). Also, the majority of respondents (52.2%) indicated that there were no conditions for which genetic testing should never be offered.

"As our knowledge and abilities in molecular genetics continues to expand, so does our ability to detect certain conditions and traits prenatally," said Dr. Harry Ostrer, Director of Human Genetics Program at NYU Langone Medical Center. "Our study gauged the consumers' opinion towards reproductive testing for diseases and enhancements. Our research has found that a majority of respondents would elect to have prenatal genetic testing for life altering conditions but most respondents did not desire testing for enhancements. This survey also demonstrated that there was a desire for additional reproductive testing for medical conditions or life altering diseases, than currently offered."

In addition researchers investigated whether learning about risk for disease to oneself might dissuade an individual from undergoing prenatal genetic testing. The survey revealed that about 80% of all respondents would still have testing if it revealed increased risk for disease for oneself including Parkinson's disease, early menopause, breast cancer and if it revealed non-paternity.

According to researchers, this study recognizes the increased consumer demand for genetic testing and this higher demand may already be exceeding the number of available genetic counselors. Consumers may have also followed their own personal values or belief systems when assessing choice for genetic tests and that genetic counselors may want to develop a policy statement about new genetic tests that are becoming available and the ethical concerns regarding prenatal testing for life altering conditions.

The authors concluded that, "it seems unlikely that the 'Age of Designer Babies' is near at- hand."

Source: NYU Langone Medical Center / New York University School of Medicine

Taken from:

http://esciencenews.com/articles/2009/01/26/consumers.desire.more.genetic.testing.not.designer.babies

Article:

Designing Life: Should Babies Be Genetically Engineered?

Wynne Parry, LiveScience Contributor
Freelance Journalist and writer
Greater New York City Area, Writing and Editing
Education: Columbia University- Graduate School of Journalism, University of Utah

Date: 18 February 2013 Time: 12:22 PM ET

NEW YORK — The increasing power and accessibility of genetic technology may one day give parents the option of modifying their unborn children, in order to spare offspring from disease or, conceivably, make them tall, well muscled, intelligent or otherwise blessed with desirable traits.

Would this change mean empowering parents to give their children the best start possible? Or would it meandesigner babies who could face unforeseen genetic problems? Experts debated on Wednesday evening (Feb. 13) whether prenatal engineering should be banned in the United States. 

Humans have already genetically modified animals and crops, said Sheldon Krimsky, a philosopher at Tufts University, who argued in favor of a ban on the same for human babies. "But in the hundreds of thousands of trails that failed, we simply discarded the results of the unwanted crop or animal."

Unknown consequences

Is this a model that society wants to apply to humans, making pinpoint genetic modifications, only to "discard the results when they don't work out?" Krimsky asked during an Intelligence Squared Debate held in Manhattan. He added that assuming no mistakes will occur would be sheer hubris.

He and fellow ban proponent Lord Robert Winston, a professor of science and society and a fertility expert at Imperial College in London, focused on the uncertainty associated with the genetic underpinnings of traits. The two also addressed the consequences of manipulating genes. [5 Myths About Fertility Treatments]

"Even [for] height, one of the most heritable traits known, scientists have found at least 50 genes that account for only 2 to 3 percent of the variance in the samples," Krimsky said. "If you want a tall child, marry tall."

Mother Nature doesn’t care

Meanwhile, their opponents, who opposed the ban, talked of empowering parents to give their children a healthy life, even if it meant giving their offspring traits they themselves could not pass down.

Lee Silver, a professor of molecular biology and public policy at Princeton University, urged the audience members to look at someone sitting next to them.

"That person and you differ at over 1 million locations in your DNA [deoxyribonucleic acid]. Most [of these variations] don't do anything," Silver said. "[But] even if you are a healthy adult, 100 [of these] can cause deadly childhood disease in your children or grandchildren."

"Mother Nature is a metaphor," he continued. "And it is a bad metaphor, because in reality inheritance is a game of craps … It won't have to be that way in the future." 

His fellow ban opponent, Nita Farahany, a professor of law and of genome sciences and policy at Duke University, attacked the idea that uncertainty should prevent the use of the technology, pointing out that reproduction, completely unaided by technology, involves much uncertainty.

"We are not going to ban natural sex," Farahany said.

Already possible

A significant portion of the debate focused on a particular technology known asmitochondrial transfer. While the majority of DNA resides in a cell's nucleus, a small amount is contained in the cell's energy factories, called mitochondria. This mitochondrial DNA is passed from mother to child. In rare cases, women have mitochondrial defects they can pass down to their children, causing devastating problems or even death.

Mitochondrial transfer can replace such defective mitochondrial DNA with that from a donor, allowing affected mothers to avoid passing these defects on to their children, who then carry genetic material from three parents (the father and two mothers, including the donor).

Opponents of a ban argued it would prevent women with mitochondrial disorders from having healthy children of their own.

"I am not here to defend every type of genetic engineering. I don't think we are ready as a society to embrace it all," Farahany said.

Rather than an outright ban, she and Silver argued for a middle ground, which would allow for certain procedures once they had been shown to be safe and effective. An emerging scientific consensus says mitochondrial transfer would fit into this category, she said.

Winston disagreed.

"We know fiddling with mitochondrial DNA may make a massive difference to what happens to nuclear DNA. … Abnormal children have been born as result of mitochondrial transfer," he said. "I think, in preventing one genetic disease, you are likely to cause another genetic disease." [The 10 Most Mysterious Diseases]

Society should instead focus on the enormous importance of environmental influences in health, Winston said. "What we should be trying to do, rather than risk making abnormal babies, is to improve the environment so the DNA functions in the best possible ways."

Neither Farahany nor Silver argued in favor of allowing parents to modify their children to ensure other traits that are less medically necessary, but nevertheless desirable, such as higher intelligence or blue eyes.

"What I think parents care about most is promoting the health of their children," Silver said.

Leading to eugenics?

Both sides referred to the specter of eugenics, an idea embraced by the Nazis, which holds that selective breeding can be used to improve the human race.

Winston and Krimsky pointed out that genetically modifying children to choose desirable traits evoked this approach. Meanwhile, Farahany noted that some of the worst abuses of government in recent history involved attempts to control reproduction. How would a ban on the genetic modification of children be enforced, she asked, would all babies be forcibly tested?  

Taken from:

http://www.livescience.com/27206-genetic-engineering-babies-debate.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+Livesciencecom+%28LiveScience.com+Science+Headline+Feed%29