Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=166356
Story Retrieval Date: 9/20/2014 10:58:54 AM CST

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Produced by Connie Karambelas and Eddy Rivera

Prenatal ultrasound image.


Custom delivery? Technology is getting closer to the total designer baby

by Connie Karambelas and Eddy Rivera
June 03, 2010


babypicture

Connie Karambelas/MEDILL

While not genetically altered, this baby  possesses an abundance of positive traits.


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Courtesy of the Centers for Disease Control and Prevention

DNA offers the blueprint to designer traits.

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Courtesy of  Princeton Survey Research Associates for Genetics and Public Policy Center

    

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Courtesy of the Genetics and Public Policy Center at the John Hopkins University

Today’s custom orders can mean a chartreuse iPod or a deli sandwich. But how about an order of baby, hold the freckles, extra brain, please?

Welcome to the world of designer babies – world-to-come to be more precise.

While science hasn’t yet perfected the technology for ultimate customization: super smart, outlandishly athletic, or outright artistic – the ability to choose sex and bypass illnesses are already ripe for the picking.

What’s currently possible

Pre-implantation genetic diagnosis, or PGD, “is specifically the area within in vitro fertilization where we can look for a particular disease and not transfer back embryos with that disease,” said Dr. Meike Uhler, a Chicago-based infertility specialist with the Fertility Centers of Illinois.    

In vitro fertilization, or IVF means an egg and sperm are combined in a lab dish, outside of the body, to allow the sperm to fertilize an egg.

Sex selection is fairly simple in the genetics world of IVF. Doctors are looking for one chromosome, and it’s 100 percent predictive, said Susannah Baruch, a policy analyst at the Genetic & Public Policy Center in Washington, D.C.

An embryo will either have two XX chromosomes, creating a female, or an XY pair, creating a male.

In the past few years one in vitro laboratory in Los Angeles advertised the possibility of using PGD to provide parents-to-be with the option to select eye and skin colors. The laboratory predicted that the options to choose would be available in the foreseeable future. However, no confirmation on the status of the procedure is available on the company’s website.

But aside from selecting physical traits, parents also have the ability to “to pre-select embryos to prevent having children with genetic diseases,” said molecular geneticist Oleg Verlinsky,  CEO of  Chicago-based Reproductive Genetics Institute.


The future of designing babies

Soon – and some say never, the ability to completely customize children may find its way into the world. 

But believers should be cautious – the process of genetic manipulation does not come without major barriers, experts warn.

When attempting to modify the genes responsible for behavior or appearance, it’s important to keep in mind that several factors play a role in the process, such as environmental and genetic contributors, said Baruch. 

“So, will someone someday say ‘we’ve identified the 10 genes most likely to contribute towards your child’s intelligence and we will help you have a child with his intelligence maximized?’” she asked.

But Baruch said proponents of genetic modification that observing the results of a “designed” child won’t be immediately recognizable to parents – if at all.

“The question of whether it will be anything more than a focus group of tests being done is another open question,” she said. “The embryos are going to be mixed bags genetically and we are all walking around with a whole mixture of genetic contributors and that plus the environment make it complex.”

Ethical concerns

While Hollywood blockbusters such as “Gattaca” and novels such as Aldous Huxley’s “Brave New World,” have exaggerated the ability to create a society where eugenics and “designer” children collide, some ethicists have seen it as a forewarning to what is in store for the future. 

Nanette Elster, a lawyer at Chicago-based Spence & Elster, P.C. and a bioethicist who teaches at DePaul University, said the possibility of designing babies poses ethical issues that are far more complicated than the technology.

By theoretically selecting a child who is a musical genius or high-powered athlete, the parent is essentially outlining the child’s future before he is able to make his own decisions.  Children may no longer be able to decide whether they want to be teachers or novelists, said Elster. 

She added that a common criticism pertaining to designing babies is “an issue of messing with nature,” she said. “It’s one thing to make alterations to prevent against something deadly, but it’s something else to be choosing positive traits.”

Arthur Caplan, the director for the Center of Bioethics at the University of Pennsylvania, agreed.

“I think it’s easy to justify using genetic testing when you’re having babies through in vitro fertilization – you’re going to make embryos anyway,” he said.

He said he understands that a woman who is undergoing IVF, a process that includes exposure to hormones and drugs to make a woman ovulate at a higher rate, already has its own risks.

Therefore, some women will go the extra step and genetically test the embryo – especially if they are at risk of having a child with diseases such as hemophilia or Huntington’s, diseases understood well by doctors and scientists, Caplan explained.

“I think where it gets controversial is when you’re going to use the technique just to try and have a child with traits that you want,” he said. “So now you’re taking the drugs and all that, but you’re just trying to produce a baby with desirable traits. Is that risk worth it in terms of increasing the odds of having blue eyes or musical ability?” 

Then there’s the question of affordability.

Caplan doesn’t believe there is much of a debate.

“People face that all the time, but it never stopped anyone from going to Northwestern, Harvard, or Penn because other people can’t afford it,” Caplan said.

The inability of some to access the latest product has never stopped its availability, he said.

Elster said there is a need to discuss the problem of affordability.

Due to the high expenses associated with the designer process, she speculated, “Are we going to increase the disparity – for the lack of better terminology – the haves and the have-nots,” she said. “And this for me raises a question whether this is an effective way of reducing health disparities, or whether this helps increase health disparities.”

When is enough, enough?

While the ethical questions are endless, given what’s currently possible in the field of genetics and what remains to be possible in the future, there is the question of when all of this will come to an end – or if it will at all.

Caplan wondered what role medicine plays in the process of PGD and genetically designing babies.

“You might say that it’s not treating disease, that it’s not treating disability. So should a doctor care what gender you are, or what your eye color is – if it really is irrelevant to health? I think that’s a question that’s going to have to be wrestled with, no matter what the consumers may want,” he said.

In part, medicine has already answered this with cosmetic elective surgery and sports medicine, both of which are aimed at improvement – so where does one cross the line that has already, in part, been crossed?

“Secondly, you don’t want anything done to children that is going to make them worse off,” Caplan said. 

The process shouldn’t be limiting, he said.

“If I can give you a much better memory, that may be good, but if it means that I take away your ability to be poetic, then I don’t think we should be involved in things that limit some skills in order to improve others.”

There is also the question of whether parents would be considered neglectful if they chose not to design their children, Elster asked.  

“How far is too far? We all have similar concerns: the physicians who do this have their concerns, and by and large they practice ethically. So we are talking about worse case scenarios, the same with the parents making the decisions – those people are just really excited for a healthy baby and you have to go through IVF to do this – goodness knows that’s not cheap, it’s not pain-free, it’s not without its risk for mom. I think that we should just be careful not to delve too deeply into the worst case scenarios and have a little faith in humanity.”