"Just because we can; should we?"
Special Report: Choosing genetic traits for unborn children is a sticky ethical dilemma
*Story part of series nominated for 2007 Jack Webster Award in Community Reporting
By Allison Cross and Derek Spalding
Nanaimo Daily News
May 25, 2007
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Sharla Miller looked at what she can only describe as "little circles" and randomly chose three of seven embryos that eventually became healthy twin girls and the newest additions to her family. Living in the U.S., the mother of five was able to choose the sex of her child, which is still illegal in Canada and many other countries.
Whether it's for cultural or religious reasons, prospective parents have always hoped for a specific sex for their unborn children and now, thanks to new genetic technologies, parents have the choice.
For Miller, she loves her three "beautiful boys" but she simply always wanted a daughter.
Technology has advanced so rapidly in recent years that enhancements make it possible to choose a child's sex, mental and physical capacity, and even their hair and eye colour.
Though many of these options are illegal in Canada, the choices are endless in the U.S., where regulations differ between each state. Genetic manipulation allows parents to ensure the health of their child to a certain extent, but is a far cry from the original intention of curing genetic diseases.
But even that seemingly altruistic endeavour is replete with ethical debates. Doctors and ethicists question how parents can properly assess the severity of a potential disease and whether their decisions will contribute to a growth in socio-economic inequalities.
Without the assistance of science, Sharla and her husband Shane seemed to have little chance at ever having a girl. After bringing three boys into the world, the couple's track record was not looking good, so when they stumbled upon a California fertility clinic on the Internet and learned they could choose the sex of their child, they seized the opportunity.
Before the discovery, Sharla had given up hope on ever giving birth to a girl and had doctors tie her Fallopian tubes. She and Shane decided to adopt instead of trying again.
"I always wanted a girl," she said. "I had a good relationship with my mother and my three sisters, and I wanted that to continue."
Sharla got what she wanted, and more, when she flew to the Fertility Institute in Los Angeles where she paid $18,000 so that doctors could select the sex of her next child. Doctors were also able to rule out a grocery list of diseases through the technique called pre-implantation genetic diagnosis, which is a process first used to eliminate genetic diseases. Of the three embryos implanted, two were successful. And on June 29, 2004, twin sisters Brooke and Brynne shifted the gender balance in the Miller household.
Despite critics who deem sex selection unethical, Sharla cherishes her twins and is grateful for the technology that helped give them life.
"There's nothing unethical about it. I think God had a hand in it because I still may never have been able to get pregnant," she said. "I wasn't trying to have the perfect babies. They told me to pick three (embryos)."
The proud mother of five wants the technology to remain available but would like to see universal regulations to keep people safe.
"We have to let (science) progress because if you stop the progression, you'll hit a wall. We're getting more and more diseases and (they're) going to affect people in one way or another. Do they stop it here and say (people) can't choose eye colour? That's not up to me to decide."
Some of those pushing for regulations south of the border want genetic manipulation re-examined before creating super babies becomes the norm. When Marcy Darnovsky first heard scientists boast nonchalantly about reproductive technology that can tailor a baby's genetic traits, she knew something was amiss.
"We became so disturbed about what scientists and others were saying, that we should embrace these genetic technologies that allow parents to modify their children," said Darnovsky, associate executive director at the Center for Genetics and Society in Oakland, Calif. "It's like choosing them from the catalogue."
Darnovsky arrived in Nanaimo on Thursday to attend Nobody's Child, Everybody's Children at Malaspina University-College and present her paper about biopolitics and how moral intelligence and political will interact and affect emerging reproductive technologies.
"We've emphasized the risks between the well-off and the poor," she said. "(The scientists') thought was, 'Gee, that's too bad.' That was horrifying, their mantra of inevitability, when in fact, we do need to take a hard look at these human biotechnologies that hold potential for good but also for harm."
Darnovsky said screening embryos for genetic traits like eye and hair colour is disturbing in many ways, particularly for its potential to magnify existing inequalities in society.
"If these technologies were to be developed we'll have a percentage of people who will be the genetically rich, more enhanced and more competent," Darnovsky said. "They will run the realms of government and business and academia. They are going to run the show. It's a scenario of new and unprecedented forms of inequality in our very genes."
Canada prohibits sex selection but the U.S. does not.
"We want this established as law," she said. "In Canada, you've done that. In the U.S., there are no laws, no regulation. We have notorious oversights of these regulations."
Darnovsky doesn't deny the issue of designer babies is being discussed in North American culture, often through movies and fiction.
"What's missing in some of the challenges that we face is bringing biopolitics in being," she said. "How do you balance individual liberty with the common good? Do we embrace enthusiastically without question or do we take a cautionary stance? On our side of the border, the pendulum has gone way too far towards individualism and a market for the technology."
Using pre-implantation genetic diagnosis to weed out diseases is different than choosing a baby with brown hair and green eyes, according to Dr. Jeff Nisker of the University of Western Ontario, but doesn't necessarily simplify the ethics of resolving how to use the procedure or push for its eradication.
"Words like disease mean different things to different people," said Nisker, an endocrinologist, ethicist and playwright who came to Malaspina for the conference. PGD, which tests early-stage embryos produced through in-vitro fertilization for the presence of a variety of conditions, is legal in Canada under the Assisted Human Reproduction Act, but has limitations. It cannot be used to determine the embryo's sex unless it has to do with specific disease identification or used to alter genetic material that can be transferred to descendents. Even an inheritable disease like cystic fibrosis doesn't necessarily warrant free reign of the technology, Nisker said.
"There are people who do very well with cystic fibrosis and have children and are very happy," he said.
Nisker wrote the play Orchids and took it to three cities in Canada in 2005 for the purpose of gaining public input on the policy development of PGD and providing the results to Health Canada.
He said participants were hesitant to draw a definitive line between acceptable and unacceptable uses of PGD but were reflective about their responsibility to consider future societies in the process of making their decisions.
"Canadians feel that there's a tension between individual choice and collective good and nobody knows where to draw the line. Nobody really wants to limit individual choice that may impact on the collective good," he said.