Marcy Darnovsky

Are We Headed for a Sci-Fi Dystopia?

For Boomers and the World War II generation, Aldous Huxley's 1932 Brave New World is the touchstone tale of a techno-utopian nightmare created by reproductive and biological engineering. Those in Gen X and Gen Y who ponder the prospect of a repro-genetic dystopia think of Gattaca.

Last week's release of a collector's edition of the 1997 film unavoidably prompts us to measure ourselves against its "not-too-distant future" of genetic castes and DNA-based discrimination. Has our world become more like Gattaca than it was a decade ago?

In Gattaca world, nonenhanced babies are born only to the poor and the sexually reckless. Those who can possibly afford it consult with a genetic technician before initiating a pregnancy, and select their future child's traits for optimum success: sex, life expectancy, intelligence, appearance.

Children with high-caliber preselected genes are classified at birth as "Valids." They're the ruling elite, eligible for top careers and entitled to high social status. "In-Valids" labor at menial jobs with no way up or out. In one memorable scene, a team of In-Valid janitors in prisoner-like jumpsuits is bussed into a gleaming office building. It's clear that the only way they get through the door is to clean the toilets and sweep the floors.

Gattaca's plot revolves around the tribulations and ultimate triumph of an In-Valid (played by Ethan Hawke) who refuses to accept his genetic destiny. Hawke's determined character manages not only to fool the genetic hierarchy's enforcers, but also -- this being Hollywood -- to get the gorgeous upper-class girl. (In real life, Hawke married and then divorced the same girl, Uma Thurman, but that's a different sort of story.)

But what about the real-life prospects of the horrors portrayed in Gattaca? In 1997, fertility clinics weren't advertising delivery of a boy or a girl -- you choose -- using the embryo screening technique portrayed in the film. The world didn't yet know about Dolly the cloned sheep. Far fewer genes had been mapped to far fewer traits. Genetic scientists hadn't yet created the monkey or the bunny engineered with a jellyfish gene to glow in the dark, or the goats and sheep that lactate spider silk, or the mice that run mazes faster than their nonengineered counterparts yet also display increased sensitivity to pain.

These technical feats are not the only portents of a future in which genetic engineers take it upon themselves to create designer babies and "enhanced" humans. Perhaps even more troubling is the small but disturbing number of prognosticators who predict this future with eagerness rather than caution; they just can't wait for Gattaca and Brave New World to transcend fiction and become real life.

Who are these promoters of human redesign? A few are researchers for whom the "sweetness" of the science eclipses its social consequences. A few more -- most notably Princeton's former mouse biologist, Lee Silver -- have shifted their careers from the lab to the talk show in order to push scenarios of a "GenRich" ruling class and a hoi polloi composed of "Naturals."

Then there's the coterie of bioethicists who can't say no to anything that any scientist dreams up, and another crew of libertarians who can't say no to anything that the market might wish to offer. And there's the whacky band of futurists who call themselves "transhumanists" and natter about "homo perfectus" and the "Singularity" -- the messianic moment when human technology will suddenly cause superhuman, superintelligent "entities" to appear among us.

Nearly all these crystal-ball gazers acknowledge that Gattaca-like inequalities would be part of their longed-for picture. But this does not seem to dampen their enthusiasm. From their perspective, it seems, self-evident truths about human equality are way outdated, and dreams of social justice and the common good are so 20th century.

Fortunately, voices of greater wisdom are also in play. Many scientists, ethicists and other scholars resoundingly reject technological applications that would so greatly exacerbate our already shameful socioeconomic disparities. In opinion surveys about designer-baby technologies -- yes, they already poll about such matters -- very large majorities say they are opposed. And every country in the world that has adopted laws or policies about cloning or genetically redesigning children -- more than three dozen nations, though not the United States -- has opted to forgo them.

Gattaca was originally released to critical acclaim but a lukewarm box office. It's a good story and a good film, but its renown has grown -- and will likely endure -- because of its bulls-eye hit on the all too realistic unease that the new technologies of human bio-engineering trigger.

Stem-Cell Debate Ignores Women

As the midterm elections draw near, stem cell politics may be taking a new turn. For years, the debate about stem cell and cloning research has focused almost completely on the moral status of embryos. The need for young women to provide fresh eggs for cloning research, and the risks that poses, have been all but overshadowed.

In several senatorial and gubernatorial races, stem cell research is still being played as an extension of embryo and abortion politics. Political candidates are still using it as an opportunity to drive wedges or shore up bases.

But some women's health advocates and policy makers are beginning to grapple seriously with the issue of egg procurement for research and the tricky ethical challenges it poses. They are asking hard questions about how women can meaningfully consent to egg retrieval when there is so little data about the safety of the procedure. And they are proposing bottom-line criteria about oversight and regulation that will reduce the risks to women who agree to provide their eggs to researchers.

California, where stem cell research is being funded with state money, has just enacted a law that will put some of the needed policy in place. The Reproductive Health and Research bill, known as Senate Bill 1260, was signed into law last month by Gov. Schwarzenegger after having been approved nearly unanimously by both houses of the California legislature.

Most embryonic stem cell research does not require women's eggs. To date, all existing embryonic stem cell lines have been derived from embryos that were created but not used for fertility purposes. Because the embryos are already there, no additional women need undergo the grueling egg retrieval process.

But some researchers are trying to develop another derivation method, which relies on the technique known as research cloning or somatic cell nuclear transfer (SCNT). Those efforts do require additional eggs, in large numbers.

To some, SCNT has acquired a status something like the Holy Grail. Scientists are jockeying to perfect the technique. Advocates are promising lifesaving cures and gigantic savings in health care costs. One politician went so far as to say that SCNT will provide each of us with a "personal biological repair kit waiting at the hospital."

But an increasing number of scientists and other observers believe that these scenarios are far-fetched. If it is ever perfected, they believe, SCNT will be useful as an indirect research tool, not as the basis of cell-based medical treatments.

Nonetheless, the lure of prizes and profits for the first SCNT success remains. In the wake of last winter's Korean cloning scandal, one U.S. researcher announced that the "cloning race" was back on. Researchers who join this fray will want a large and steady supply of women's eggs.

What does this mean for women? Egg retrieval involves giving a woman hormones to first "shut down" and then "over-stimulate" her ovaries, followed by surgical extraction of multiple eggs under general anesthesia. Though the procedure is widely used in fertility clinics, data about both its short-term and long-term risks are grossly inadequate. Serious adverse reactions, even several deaths, have been reported.

We have already seen serious problems in stem cell research where oversight was lacking. Woo-suk Hwang, the Korean cloning researcher who famously turned out to have fabricated his data and embezzled government funds, also cut legal and ethical corners in collecting eggs. More than 13 percent of the 119 South Korean women who provided eggs for Hwang's failed cloning efforts experienced reactions severe enough that they needed to be hospitalized.

Thus the importance of SB 1260. It defines women who provide eggs for research as "research subjects," triggering federal and state regulatory protections. It ensures that women be better informed of the risks of egg retrieval, mandates that no woman who needs treatment for an adverse reaction will have to pay for it herself, and sets some rules to prevent conflicts of interest between the cloning researchers and the medical personnel who conduct the egg retrieval procedures. In order to head off the emergence of a market in which predominantly poor women are the ones who wind up selling their eggs, it limits payment to reimbursement for direct expenses. In doing so, SB 1260 draws on recommendations issued in 2005 by a special committee of the National Academies for Sciences, and on policies adopted by the California Institute for Regenerative Medicine and by the state of Massachusetts.

SB 1260 was authored by Democratic state Senator Deborah Ortiz, an early champion of stem cell research. Sen. Ortiz was key in getting the stem cell initiative on the 2004 ballot, but began working right after the election to fix some of its serious flaws. Her efforts and those of several pro-choice public-interest organizations (including my own) helped persuade the California stem cell institute to adopt similar regulations for the research it funds. The bill applies to research not funded by the stem cell institute, which means that all egg retrieval for research in California must follow more or less the same rules.

Currently, efforts to clone embryos for stem cell research are underway in only a few states besides California. But this may change soon. To the extent that scientists in other states begin experiments that require women's eggs, measures like California's will be needed to set enforceable standards and safeguard women's health.

At a time of deep political polarization and on a high-controversy issue, California's law on standards for egg retrieval is a result of strong bipartisan agreement. In an era of anti-regulatory sentiment coupled with unwarranted government intrusions into the personal sphere, it demonstrates an appropriate role for government regulation. In the wake of tendencies to deny that humanity's technical prowess can produce perils as well as wonders, it signals optimistic caution about the powerful tools represented by the new and emerging human biotechnologies.

Sex Selection Goes Mainstream

Several times over the past few months, a small but striking ad from a Virginia-based fertility clinic has appeared in the Sunday Styles section of the New York Times. Alongside a smiling baby, its boldface headline asks, "Do You Want To Choose the Gender Of Your Next Baby?"

If so, the ad continues, you can join "prospective parents...from all over the world" who come to the Genetics & IVF Institute (GIVF) for an "exclusive scientifically-based sperm sorting gender selection procedure." The technique, known by the trademarked name MicroSort, is offered as a way to choose a girl or boy either for the "prevention of genetic diseases" (selecting against the sex affected by an X-linked or Y-linked condition) or for "family balancing" (selecting for a girl in a family that already has one or more boys, or vice versa).

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