Will Gattaca Come True?
Noninvasive, early fetal tests for sex, paternity, and chromosomal conditions will change pregnancy dramatically—and raise tricky ethical questions.
The latest sex tests will almost certainly wreak havoc on countries with already significant sex ratio imbalances as they spread overseas. When news of Baby Gender Mentor reached India, for example, it sparked an outcry. Sex determination, whether through blood tests or ultrasound, is illegal in India, but many doctors flout the law. And if women can one day obtain results without the help of a physician or technician—by pricking a finger and sending in a spot of blood, as Baby Gender Mentor promised—gynecologist Puneet Bedi says India’s sex ratio at birth would reach a “level unthinkable by any means so far.” India’s campaigners are prepared to fight the introduction of NIPD. But activist Sabu George says the fledgling anti-sex selection campaign is a poor match for the Goliath of the Western medical technology industry.
When Lo licensed his technology to Sequenom, he stipulated that it could not be used for sex selection. Rabinowitz says Natera won’t test for sex at this point, either. But how long such provisions will hold is unclear. Meanwhile, NIPD’s reach is expanding as the technology used to analyze cffDNA improves. In December 2010, Lo published a paper in Science Translational Medicine showing that in principle, at least, scientists can piece together the entire fetal genome from cffDNA. Lo says that exceeded even his own expectations: “If you asked me prior to 2008, I would have probably said that was science fiction.”
At the time his paper was published, the process cost $200,000. Now, with the cost of DNA sequencing dropping faster than that of computing power, he estimates the bill may come to one-tenth of that—still expensive, but no doubt tempting for some parents. Lo wagers complete fetal genome testing might be widely available in a clinical setting within a decade. What fetal genes might one day suggest about a baby’s eye color, appearance, and intellectual ability will be useful to parents, not insurers. But with costs coming down and insurers interested in other aspects of the fetal genome, a Gattaca-like two-tiered society, in which parents with good access to health care produce flawless, carefully selected offspring and the rest of us spawn naturals, seems increasingly plausible.
There are considerable hurdles to clear still before full fetal genome testing is available in a clinical setting. For the present, Lo envisions tailored packages targeting the 10 to 15 diseases most relevant to a couple’s genetic history. But the ethical and logistical issues raised by accessing even portions of the fetal genome are tricky enough.
How to explain the test to patients is a particularly thorny question. Currently, genetic counselors are brought in only with parents who undergo amniocentesis or other diagnostic tests after finding out the fetus has an elevated risk of, say, Down syndrome. Widespread introduction of NIPD means all parents will need counseling, and without enough counselors to go around, the burden of explaining the test will most likely fall on the OB-GYN(though Verinata provides an in-house genetic counseling hotline). “You’ll have a lot of women with OB-GYNs who are not really trained in genetics who are going to try to explain to them the implications of NIPD,” says Jaime King, a law professor at University of California Hastings College of the Law. “And it’s not just what happens when you get a high-risk result. It’s: Do you even want this testing? And what do you want it for? And do know what you’ll do with the results around a whole range of conditions? That’s not something that women are currently prepared to decide—or that doctors are currently prepared to help them decide.” That may be why in February, the National Society of Genetic Counselors adopted a statement opposing the routine use of NIPD for low-risk women. But since fetal DNA tests are risk-free, some doctors might offer them simply to ward off lawsuits.
More fantastically, the government might require testing. University of Texas-Austin bioethicist John A. Robertson recently outlined, for the sake of argument, a scenario in which states mandate that pregnant women undergo fetal DNA tests to avoid the costs of caring for the disabled people who might otherwise be born. There is constitutional precedent, he pointed out, in requiring suspected drunk drivers to submit to blood tests. (A state would have more trouble forcing women to hear or act on the results, he wrote.)
Marcy Darnovsky, executive director of the Center for Genetics and Society in Berkeley, Calif., notes that NIPD will provide women with “enormous amounts of information about the fetus that they’re carrying at a very early stage. And it’s available at a time when you can terminate a pregnancy with a pill.” In one calculation by the Stanford Law School bioethicist Henry T. Greely, if just two-thirds of pregnant American women undergo NIPD, the number of fetal genetic tests done in the United States will jump from fewer than 100,000 a year to about 3 million. Just what that will do to the abortion rate is impossible to predict—but it probably will rise. (Some experts argue that an increase will be offset by our expanded ability to treat some conditions in utero.)
Even if the overall abortion rate increases, though, it may become more difficult for some women to get abortions. Anti-abortion activists are prepared for the new technology. Think Rick Santorum’s recent tirade about amniocentesis allowing us to “cull the ranks of the disabled” was overblown? It was just the beginning. A recent LifeNews.com article calls NIPD a “seek-and-destroy mission against any life in the womb.”
For instance, pro-life activists might seek to ban Medicaid coverage of NIPD along the lines of the Hyde Amendment prohibition on the use of Medicaid funds for abortion—a change that would disproportionately affect poor women.
Just how soon the bulk of insurers will cover NIPD—and transform the discussion surrounding pregnancy and abortion in the process—is still unclear. A lot will depend on the accuracy rates to come out of trials like Natera’s. If those cement NIPD as a replacement for amniocentesis, the new tests will undoubtedly mean less suffering for women like Rabinowitz’s sister. But for the rest of us, things will get a lot more complicated.
This article arises from Future Tense, a collaboration among Arizona State University, the New America Foundation, and Slate. Future Tense explores the ways emerging technologies affect society, policy, and culture. To read more, visit the Future Tense blog and the Future Tense home page. You can also follow us on Twitter.
Mara Hvistendahl is a correspondent with Science and the author of Unnatural Selection: Choosing Boys Over Girls, and the Consequence of a World Full of Men. Follow her on Twitter here.