Skip to main content

Is genetic testing humans playing God?

By Robert Klitzman
updated 1:25 PM EST, Sat February 22, 2014
STORY HIGHLIGHTS
  • Robert Klitzman: Testing to screen embryos of gene mutations raises ethical issues
  • Klitzman: The upside is it can eliminate mutations that cause untreatable diseases
  • But this technology can be abused and some may use it for selective breeding, he says
  • Klitzman: We need to know where to draw the line and not cross over into eugenics

Editor's note: Robert Klitzman is a professor of psychiatry and director of the Masters of Bioethics Program at Columbia University. He is author of "Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing."

(CNN) -- "It's a miracle," she told me. "We can now have a baby that won't have Huntington's disease. I thought I'd never be able to have any kids -- because of the disease." Her father had died from this disorder, which results from a gene mutation. She feared that she might have the mutation, too. But she was too scared to undergo testing for it. She also worried that if she had it, she might pass it on to her children.

This disease causes severe neurological and psychiatric problems, and eventual death at around the same age as one's parent died of it -- usually in one's 40s or 50s. If a parent has the disease, each child has a 50% chance of inheriting it.

Woody Guthrie, the singer and songwriter, died of this illness. His children then had to debate whether they wanted to know if they, too, had the lethal mutation. His son, Arlo, for instance, decided not to find out. Many such offspring feel that to undergo this genetic test is to risk "getting a death sentence," i.e., while they may feel fine, they know they have a mutation that will kill them.

Robert Klitzman
Robert Klitzman
Genetic testing: Good medicine or TMI?

The woman with whom I spoke was afraid to learn if she had this gene. But she wanted to make sure that her children did not get it.

Luckily, a relatively new procedure -- pre-implantation genetic diagnosis, or PGD -- allows doctors to test embryos before they are implanted into a woman's womb, to help ensure that certain gene mutations are not passed on. Using In Vitro Fertilization, sperm fertilize eggs outside the womb, creating embryos. When the embryos are a few days old, one cell is removed and can be tested for hundreds of genes.

This woman struggled with what to do. She feared she would be playing God. But she decided to undergo the procedure. The doctor told her that embryos without the mutation were implanted inside her. He did not tell her whether he had identified any embryos with the mutation. Thus, she was able to have a child free of the gene mutation that would cause Huntington's disease, tremendously relieving her and her husband of worries. She still does not know if she has the bad gene herself.

But this procedure is raising myriad complex ethical and social issues. It can eliminate gene mutations for untreatable diseases that kill infants and adults. But it can also be used to select embryos based on other genetic factors.

Many parents decide that they want to choose, for instance, their future child's gender, and many doctors now use this technology to do so. At some point in the future, tests will no doubt be marketed for genes that, companies will claim, are associated with behavioral traits such as intelligence, sexual orientation, possibly even perfect musical pitch, or physical characteristics like height, blond hair and blue eyes. Many of these claims will be highly questionable.

Among diseases, Huntington's is rare in that the gene mutation predicts the disorder. But for most people, common diseases and traits result from combinations of both nature and nurture -- multiple genes, along with various environmental and other factors. So, a particular mutation may contribute in some small way toward a disease or trait, but it would not be the sole determinant. A gene mutation might double your chance of getting a particular disease; say your risk may rise from 5% to 10%, but you would still have a 90% chance of never getting the disease.

Profound dilemmas emerge concerning for which genes doctors should use PGD, and who should decide. Most Western European countries ban or heavily restrict use of this technology to serious diseases like Huntington's -- not gender. In contrast, the United States doesn't have laws governing when it can or cannot be used.

For example, the procedure has been used to avoid embryos with the gene that increases the risk of breast cancer, though the disease wouldn't affect the child for perhaps 40 or 50 years. Individuals with one of the breast cancer mutations can have their breasts and ovaries removed to prevent disease. Also, by 2065, treatments may exist. And what about gene mutations that have, say, a 20% or 30% chance of causing disease when the child is in midlife? Should parents discard an embryo based on that percentage?

This technology is expensive -- about $20,000 for each cycle of IVF -- and many insurance companies do not cover most of the cost. Hence, wealthy parents can afford to eliminate certain diseases from their offspring, while poorer and middle-class parents will not be able to do so.

Consequently, over time, certain disease will become relegated to certain social groups, but not others. The gap between the wealthiest 1% and everyone else is already expanding. Should we allow this method to widen it more in the genetic pool? Some people argue yes: Wealthy parents can already afford to send their children to private schools, private tutors, SAT prep classes, while other parents cannot do so. But eliminating diseases is in some ways more extreme.

Others see this technology as raising troubling issues of eugenics, which had horrific results under the Nazis, who sought to "purify" the gene pool in Germany, and eliminate people whom they felt were genetically inferior. The film "Gattaca" and Aldous Huxley's 1932 novel, "Brave New World," depict the dark problems that can ensue.

So far, we have allowed parents to choose when to use this procedure. Government regulations might be cumbersome. The American Society for Reproductive Medicine, the professional organization for physicians working in this area, has issued some guidelines, permitting broad use, but these are not really enforced.

Yet many patients, and even doctors, know little about this technology. More education of both physicians and the public is critical. We also need broad discussion and debate about what is at stake, and where to draw the line.

"How beauteous mankind is," Shakespeare's Miranda exclaims optimistically in "The Tempest." "Oh brave new world, that has such people in it!" Huxley used these words ironically. Between her hope and his pessimism may lie the reality -- depending on how we all now respond.

Follow us on Twitter @CNNOpinion

Join us on Facebook/CNNOpinion

The opinions expressed in this commentary are solely those of Robert Klitzman.

ADVERTISEMENT
Part of complete coverage on
updated 9:49 AM EDT, Thu July 24, 2014
Patrick Cronin and Kelley Sayler say the world is seeing nonstate groups such as Ukraine's rebels wielding more power to do harm than ever before
updated 6:05 PM EDT, Wed July 23, 2014
Ukraine ambassador Olexander Motsyk places blame for the MH17 tragedy squarely at the door of Russia
updated 7:42 AM EDT, Thu July 24, 2014
Mark Kramer says Russia and its proxies have a history of shooting down civilian aircraft, often with few repercussions
updated 1:01 PM EDT, Thu July 24, 2014
Les Abend says, with rockets flying over Tel Aviv and missiles shooting down MH17 over Ukraine, a commercial pilot's pre-flight checklist just got much more complicated
updated 9:17 AM EDT, Thu July 24, 2014
Mark Kramer says Russia and its proxies have a history of shooting down civilian aircraft, often with few repercussions
updated 12:37 PM EDT, Thu July 24, 2014
Gerard Jacobs says grieving families and nations need the comfort of traditional rituals to honor the remains of loved ones, particularly in a mass disaster
updated 10:13 AM EDT, Thu July 24, 2014
The idea is difficult to stomach, but John Sutter writes that eating dog is morally equivalent to eating pig, another intelligent animal. If Americans oppose it, they should question their own eating habits as well.
updated 12:30 PM EDT, Wed July 23, 2014
Bill van Esveld says under the laws of war, civilians who do not join in the fight are always to be protected. An International Criminal Court could rule on whether Israeli airstrikes and Hamas rocketing are war crimes.
updated 8:05 AM EDT, Wed July 23, 2014
LZ Granderson says Ronald Reagan went horseback riding and took a vacation after the Korean Air Crash of 1983. So why does the GOP keep airbrushing history to bash Obama?
updated 9:38 AM EDT, Wed July 23, 2014
Aaron Miller says Kerry needs the cooperation of Hamas, Israel, Egypt and others if he is to succeed in his peacemaking efforts
updated 8:51 AM EDT, Wed July 23, 2014
Errol Louis says the tragic death of Eric Garner at the hands of the NYPD has its roots in the "broken windows" police strategy from the crime-ridden '80s.
updated 10:08 AM EDT, Wed July 23, 2014
Gordon Brown says the kidnapped Nigerian girls have been in captivity for 100 days, but the world has not forgotten them.
updated 7:27 AM EDT, Wed July 23, 2014
Ruben Navarrette says Texas Gov. Rick Perry is right to immediately send 1,000 National Guard troops to the U.S.-Mexico border in response to the border children crisis.
updated 9:56 AM EDT, Tue July 22, 2014
Ukraine's president says the downing of MH17 was a terrorist act, but Richard Barrett says it would be considered terrorism only if it was intentional
updated 4:15 PM EDT, Tue July 22, 2014
Robert McIntyre says the loophole that lets firms avoid taxes should be closed
updated 11:35 AM EDT, Tue July 22, 2014
Jeronimo Saldana and Malik Burnett say Gov. Perry's plan to send National Guard to the border won't solve the escalating immigration problem.
updated 1:42 PM EDT, Tue July 22, 2014
Sally Kohn: The world's fish and waters are polluted and under threat. Be very careful what fish you eat
updated 8:42 AM EDT, Tue July 22, 2014
Les Abend says threat information that pilots respond to is only as good as the intelligence from air traffic controllers. And none of it is a match for a radar-guided missile
updated 8:35 AM EDT, Mon July 21, 2014
Frida Ghitis: Anger over MH17 is growing against pro-Russia separatists. It's time for the Dutch government to lead, she writes
updated 8:27 AM EDT, Mon July 21, 2014
Julian Zelizer says President Obama called inequality the "defining challenge" of our time but hasn't followed through.
updated 7:57 AM EDT, Mon July 21, 2014
Gene Seymour says the 'Rockford Files' actor worked the persona of the principled coward, charming audiences on big and small screen for generations
updated 10:17 AM EDT, Mon July 21, 2014
Daniel Treisman says that when the Russian leader tied his fate to the Ukraine separatists, he set the stage for his current risky predicament
updated 12:42 PM EDT, Fri July 18, 2014
Andrew Kuchins says urgent diplomacy -- not sanctions -- is needed to de-escalate the conflict in Ukraine that helped lead to the downing of an airliner there.
updated 9:50 PM EDT, Fri July 18, 2014
Jim Hall and Peter Goelz say there should be an immediate and thorough investigation into what happened to MH17.
updated 11:07 AM EDT, Fri July 18, 2014
Pilot Bill Palmer says main defense commercial jets have against missiles is to avoid flying over conflict areas.
updated 1:55 PM EDT, Sun July 20, 2014
Valerie Jarrett says that working women should not be discriminated against because they are pregnant.
updated 3:53 PM EDT, Mon July 21, 2014
David Wheeler says the next time you get a difficult customer representative, think about recording the call.
updated 3:33 PM EDT, Fri July 18, 2014
Newt Gingrich says the more dangerous the world becomes the more Obama hides in a fantasy world.
updated 6:11 AM EDT, Fri July 18, 2014
Michael Desch: It's hard to see why anyone, including Russia and its local allies, would have intentionally targeted the Malaysian Airlines flight
updated 3:14 PM EDT, Thu July 17, 2014
LZ Granderson says we must remember our visceral horror at the news of children killed in an airstrike on a Gaza beach next time our politicians talk of war
updated 8:06 AM EDT, Thu July 17, 2014
Sally Kohn says now the House GOP wants to sue Obama for not implementing a law fast enough, a law they voted down 50 times, all reason has left the room.
updated 8:14 AM EDT, Thu July 17, 2014
A street sign for Wall Street
Sens. Elizabeth Warren, John McCain and others want to scale back the "too big to fail" banks that put us at risk of another financial collapse.
updated 4:16 PM EDT, Thu July 17, 2014
Newt Gingrich writes an open letter to Robert McDonald, the nominee to head the Veterans Administration.
updated 12:01 PM EDT, Fri July 18, 2014
Paul Begala says Dick Cheney has caused an inordinate amount of damage yet continues in a relentless effort to revise the history of his failures.
updated 10:04 AM EDT, Fri July 18, 2014
Kids who takes cell phones to bed are not sleeping, says Mel Robbins. Make them park their phones with the parents at night.
updated 12:25 PM EDT, Thu July 24, 2014
Buzz Aldrin looked at planet Earth as he stood on talcum-like lunar dust 45 years ago. He thinks the next frontier should be Mars.
updated 2:04 PM EDT, Wed July 16, 2014
Mark Zeller never thought my Afghan translator would save his life by killing two Taliban fighters who were about to kill him. The Taliban retaliated by placing him on the top of its kill list.
updated 11:18 AM EDT, Thu July 17, 2014
Jeff Yang says an all-white cast of Asian characters in cartoonish costumes is racially offensive.
updated 9:24 PM EDT, Wed July 16, 2014
Gary Ginsberg says the late John F. Kennedy Jr.'s reaction to an event in 1995 summed up his character
updated 12:41 PM EDT, Wed July 16, 2014
Meg Urry says most falling space debris lands on the planet harmlessly and with no witnesses.
ADVERTISEMENT
ADVERTISEMENT
ADVERTISEMENT
ADVERTISEMENT