Genetic Modification Does Not Equal Selective Abortion
As scholar Adam Thierer and I mentioned in our recent article “Might We Avoid a CRISPR Technopanic Altogether?,” it seems that the “panic cycle” for genetic modification is moving much more quickly than for other thorny technological innovations in the past (like in vitro fertilization). However, we also noted, “On the other hand, more widespread backlash could develop if some of the most dangerous genetic editing capabilities start to become commonplace.”
Iceland Pushing to Eliminate Down Syndrome
Recently, CBS News broke a story about Down syndrome in Iceland that some have conflated to be one of these dangerous applications of genetic technology. However, what is happening in Iceland is not genetic modification; it is selective abortion. Genetic modification techniques offer a path to having children born without the genetic anomaly that leads to Down syndrome, without terminating a pregnancy. Critics of the events in Iceland ought not to indiscriminately equate the two.
According to CBS, the Icelandic government has mandated that all expectant mothers must be made aware that genetic screening tests are available to determine the likelihood that their developing child will be born with Down syndrome. Upon learning of this test, about 80% of pregnant women choose to take the test and close to 100% of those who learn that there is a high probability of the condition choose to abort their child. These numbers mean that there are very few people with Down syndrome in Iceland. In the entire country of over three hundred thousand, only one or two children with the condition are born every year.
Iceland’s Actions Do Not Equal Gene Modification
Partly in response to this news, journalist and historian David Perry wrote an article for The Nation called “We’re Failing Our Test Run for the Age of CRISPR.” Perry, the father of a young man with Down syndrome, believes that the history of genetic testing, consultation, and abortion decisions related to the condition indicates that we are failing the “test run” to use science to responsibly build a better society. Instead, we are “making decisions based on fear and stigma.” He worries that as more powerful technology like CRISPR is developed, this problem could result in serious consequences, namely that “genetic diversity will gradually become code for poverty.”
Perry several times mentions that he is “pro-information” and advocates greater public information around issues like Down syndrome and genetic testing as a powerful way to mitigate abuses. I also have advocated for greater education on technology like CRISPR and have noted how that prepares the next generation to intelligently participate in necessary ethical debates.
I also agree with Perry when he notes that, “Prenatal testing followed by selective abortion is not genetic engineering.” However, this important point gets lost in the rest of his essay, weakening the argument he makes. Extrapolating problems with genetic screening methods followed by abortion that are “reactive and postconception” to genetic modification, which is “preconception and proactive,” is tenuous at best. Icelanders are choosing to terminate the life of a child with Down syndrome. Genetic modification instead offers a path for parents to bring that very same child into the world without the genomic defect that causes Down syndrome.
Perry allows his words to inspire the very fear and panic that he wishes people would avoid when making important decisions. He seems to lump genetic screening, selective abortion, and genetic modification into the same pile and then characterizes Icelandic abuses of half of these procedures (screening and abortion) as dangerous “corner cases,” evidence that extreme caution should be used when approaching the other half of the pile (genetic modification).
Education is Key
Perry believes that changing the public’s attitude about disabilities like Down syndrome is the best solution for the future. In reference to the challenges his son faces in living with a disability he states, “We’ve never denied that there are challenges, but the greatest ones are constructed by an ableist society, not inherent in his disability. Society can be changed. His genes don’t need to be.”
I agree that longstanding biases that society possesses against people who are different or seen as not “normal” ought to be combated. Those with Down syndrome or any other disability are, in their fundamental humanity, no different than anyone else. However, I recognize that technology like CRISPR changes the debate by opening a path for parents to choose, to a certain extent, the characteristics with which their children are or are not born without terminating pregnancies as is the case with preimplementation genetic diagnosis and selective abortion.
With CRISPR, the debate can shift from questions about the ethics of discarding embryos to questions about the ethics of modifying an embryo to conform to a vision of what is “healthy” or “normal.” These questions seem to be fairly straight forward when applied to a life-threatening disease like Leigh syndrome, but become much more difficult when applied to a non-life-threatening condition like Down syndrome.
I do not have the answers to these questions. They absolutely deserve further exploration. I certainly think that history testifies that government should not be allowed to decide these questions. If not government, then non-governmental institutions and the general public will have to decide these questions. For that to be possible, educating the next generation and ourselves about CRISPR, its possibilities, and its drawbacks is absolutely necessary.
While Perry can legitimately wonder about a “potentially dystopian future where altered genes separates the have from the have-nots,” the events in Iceland cannot be used as evidence that we are hurtling toward such a future or that we have already failed to solve these issues. We have not.
Future commentators may be more explicit than Perry and use these events in Iceland or similar future situations to fuel a resurgent CRISPR technopanic, as Thierer and I feared. I would echo Perry’s own advice and advocate for greater public knowledge of what exactly genetic modification technology is and is not, as well as its immense benefits and real risks.
As I said elsewhere, “Education, not panic, is the key to the future.”
 Admittedly, it will likely be some time before the technology is demonstrated to be safe and effective enough to cut out the entire extra chromosome that is the most common cause of Down syndrome. Nevertheless, it is theoretically possible for the CRISPR-Cas9 system to do such a thing.
 I discuss the concept of “corner cases” in slightly more detail in my essay “Technology Could Enable Personal Medicine Whether We Like It Or Not.” These are the truly horrific applications of genetic technology that regulatory agencies like the FDA should concentrate on curbing. One example is using genetic modification to intentionally harm a developing child.
 Many children born with Leigh syndrome do not live past the age of three.