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martes, 10 de marzo de 2009

Designer Babies: A Right to Choose



When a Los Angeles fertility clinic offered last month to let parents choose their kids' hair and eye color, public outrage followed. On March 2, the clinic shut the program down — and that, says transhumanist author James Hughes, is a shame.

According to Hughes, using reproductive technologies — in this case, pre-implantation genetic diagnosis (PGD), in which doctors screen embryos before implanting them — for cosmetic purposes is just an old-fashioned parental impulse, translated into 21st century technology.

If nobody gets hurt and everybody has access, says Hughes, then genetic modification is perfectly fine, and restricting it is an assault on reproductive freedom. "It's in the same category as abortion. If you think women have the right to control their own bodies, then they should be able to make this choice," he said. "There should be no law restricting the kind of kids people have, unless there's gross evidence that they're going to harm that kid, or harm society."

Hughes' views are hardly universal. "I'm totally against this," said William Kearns, the medical geneticist who developed the techniques used by the Fertility Institutes for cosmetic purposes, in a newspaper interview. In the same article, Mark Hughes, one of the inventors of pre-implantation genetic diagnosis, called its non-therapeutic use "ridiculous and irresponsible."Wired.com talked to James Hughes and to Marcy Darnovsky, associate executive director of the Center for Genetics and Society, about genetic selection.

Wired.com: What do you think about using reproductive technologies to pick cosmetic traits?



James Hughes: It's inevitable, in the broad context of freedom and choice. And the term "designer babies" is an insult to parents, because it basically says parents don't have their kids' best interests at heart.

The only people who are consistent about this are the Catholics. They say that you have to accept whatever pops out of your procreative unions. But if you think that people have a right to choose how many children they have, or the partners they have them with — "I love you, but you're just too short, or too ugly" — that's a procreative choice.

Wired.com: What do you think of the "right to choose" argument?

Marcy Darnovsky: Reproductive freedom doesn't mean that anything goes. A woman's fundamental right to continue a pregnancy is apples; choosing the characteristics of a child is bowling balls.

Wired.com: Why is it any different from taking a dietary supplement during pregnancy?

Darnovsky: Because it's an extreme technology. We'll never really be able to tell if it's safe without doing unethical human experimentation. And if it does work, the idea that it could be accessible to everyone is specious. We can't even get universal childhood vaccinations. We hope now that we're going to get expanded coverage and health care, but to think we'll supply fertility treatments to everyone, not just people with infertility problems — that's going to break the bank in a hurry.

Wired.com: But is it different from, say, refusing to conceive with someone who has traits you don't want to pass to your kids?

Darnovsky: If you go 30 miles per hour, why not go 50 mph? Why have speed limits at all? Why not go 200 mph on this small residential street?

Wired: But what is actually wrong with it?

Darnovsky: It's the question of equality. We'd endorse a set of societal and commercial dynamics that would lead us into a new world of inequality and discrimination. Just as privilege accrues to those with privilege, the same would be true of genetically modified children of existing elites.

Wired.com: So the human race would bifurcate into modified superiors and unmodified inferiors.

Darnovsky: That's a catchy way of putting it, but many bioethicists who've looked at this think it's the most likely scenario.

If I've got a dozen embryos I could implant, and the ones I want to implant are the green-eyed ones, or the blond-haired ones, that's an extension of choices we think are perfectly acceptable — and restricting them a violation of our procreative autonomy.

I want to see a society in which parents can say, I want my kids to have the best possible options in life. That might include getting rid of obesity genes. Every child should be a loved child, but there is no virtue in accident.

Wired.com: But one could argue that obesity is a health problem, not a cosmetic issue.

Hughes: So parents are only allowed to have preferences about health conditions? What if we discovered that eating fish oil while pregnant increases intelligence, which it does? We're not going to say that you can't make certain dietary choices. In fact, we encourage them.

And would we say it was morally inappropriate for parents to stand on their head during copulation, if it made their children blond? I doubt it. The only reason this is different is because it involves embryo selection.

Wired.com: But isn't this going to produce a super-race of children born to people wealthy enough to afford artificial reproduction?

Hughes: Insofar as the choices are eye color and hair color, that's not going to exacerbate inequalities in society. It's a minor way in which greater wealth allows more reproductive choice, but it shouldn't be a reason to override reproductive freedom.

If PGD had the ability to double the IQs of children — which it doesn't — then that would be the sort of inequality that warranted a social policy against it. I'm worried about that situation, not hair and eye color.

Gross exacerbation of social inequality is a grave social harm. That's why we need universal health care, and universal access to any technology which provides profound enablement.

Wired.com: It's hard to imagine these ever being universally available.

Hughes: Medicaid has considered the provision of fertility services. Some say fertility isn't a health issue — but I think that's B.S. Having a saline breast implant put in after a mastectomy isn't a health issue, but we pay for it, because it improves quality of life.

Wired.com: Some ethicists say that non-therapeutic reproductive technologies shouldn't be used until the industry is better-regulated.

Hughes: Fertility clinics and reproductive medicine need a complete revamping of their regulatory structures. Many of the procedures are not being monitored for safety and efficacy. But those are the only two grounds on which to base a legitimate societal regulation.

Wired.com: Where do you draw the line? What if I want disabled children?

Hughes: We've been debating that for five or six years, ever since a deaf lesbian couple in Chicago wanted to use PGD to choose among the embryos they'd fertilized for one that inherited a form of deafness. They said that deafness is a perfectly benign condition, and that living in the hearing world is like living in the white world as a black person.

I argue in Citizen Cyborg that I wouldn't want to see a law saying you can't do this, but I'd want to see strong moral sanctions.

The reproductive autonomy of parents should be protected at a high level — and that even includes decisions that impose a degree of harm on children.

Wired.com: But what if I wanted to have a child who was deformed?

Hughes: I think a principle developed by Peter Singer is useful: If you think parents should be punished for taking that ability away from a child who's already born, that's probably harm.

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