Ethics Questions Arise as Genetic Testing of Embryos Increases

Gina Kolata, New York Times, February 4, 2014

Her first thought after she heard the news, after she screamed and made her mother and boyfriend leave the room, was that she would never have children. Amanda Baxley’s doctor had just told her, over a speakerphone in her psychiatrist’s office, that she had the gene for Gerstmann-Straussler-Scheinker disease, or GSS, which would inevitably lead to her slow and terrible death.

This rare neurological disease had stalked her family for generations. Her father, 56, was even then in its final throes.

On the spot, Ms. Baxley, 26, declared she would not let the disease take another life in her family line, even if that meant forgoing childbirth. “I want it stopped,” she said. The next day, her boyfriend, Bradley Kalinsky, asked her to marry him.

But the Kalinskys’ wedded life has taken a completely unexpected turn, one briefly described on Monday in The Journal of the American Medical Association Neurology. Like a growing number of couples who know a disease runs in the family, they chose in vitro fertilization, and had cells from the embryos, created in a petri dish with her eggs and his sperm, tested first for the disease-causing gene. Only embryos without the gene were implanted. The Kalinskys are now parents of three children who will be free of the fear of GSS.

Genetic testing of embryos has been around for more than a decade, but its use has soared in recent years as methods have improved and more disease-causing genes have been discovered. The in vitro fertilization and testing are expensive—typically about $20,000—but they make it possible for couples to ensure that their children will not inherit a faulty gene and to avoid the difficult choice of whether to abort a pregnancy if testing of a fetus detects a genetic problem.

But the procedure also raises unsettling ethical questions that trouble advocates for the disabled and have left some doctors struggling with what they should tell their patients. When are prospective parents justified in discarding embryos? Is it acceptable, for example, for diseases like GSS, that develop in adulthood? What if a gene only increases the risk of a disease? And should people be able to use it to pick whether they have a boy or girl? A recent international survey found that 2 percent of more than 27,000 uses of preimplantation diagnosis were made to choose a child’s sex.

In the United States, there are no regulations that limit the method’s use. The Society for Assisted Reproductive Technology, whose members provide preimplantation diagnosis, says it is “ethically justified” to prevent serious adult diseases for which “no safe, effective interventions are available.” The method is “ethically allowed” for conditions “of lesser severity” or for which the gene increases risk but does not guarantee a disease.

{snip}

Preimplantation diagnosis often goes unmentioned by doctors. In a recent national survey, Dr. Robert Klitzman, a professor of clinical psychiatry and bioethicist at Columbia University, found that most internists were unsure about whether they would suggest the method to couples with genes for diseases like cystic fibrosis or breast cancer. Only about 6 percent had ever mentioned it to patients and only 7 percent said they felt qualified to answer patients’ questions about it.

{snip}

Patients can avoid all testing and hope for the best, playing what Dr. Ilan Tur-Kaspa, the founder and director of the Institute for Human Reproduction, calls “reproductive roulette.” Or, he said, they can conceive on their own and have the fetus tested. If the gene is present, they face the difficult choice of whether to abort the pregnancy. Preimplantation genetic diagnosis provides another option.

Dr. Tur-Kaspa said that after having done the procedure a thousand times, he cannot think of a gene he would not test for if a patient requested it.

{snip}

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  • cloudswrest

    When are prospective parents justified in discarding embryos?

    What kind of fool question is this? In America there is abortion on demand and they’re asking about embryos? Sounds like these “ethicists” are just blowing it out their butt to raise FUD.

  • Spartacus

    If this method leads to identifying low-IQ, predispozition to murder and rape, and basically any disease/mental ilness/ defect you can imagine… The US will be at 95% White country in no time. That’s what they’re afraid of .

    • NeanderthalDNA

      Gee…we have the ability to eradicate all congenital illness. What a great thing!

      No…discrimination against retards.

      But it’s not like we’re killing people in concentration camps…

      No, embryos are dying.

      But think of all the resources we could divert to solving other problems, building great functional monuments, conquering space…

      No. You’re a Nazi.

      Oh…

    • Brian

      The more likely scenario is culling the black/brown embroyos who carry the highest concentration of the genes that lead to the worst ‘black/brown behavior’.

  • Diana Moon Glampers

    Gattaca!

    • Anglokraut

      Love your handle!

    • willbest

      As in Gattaca, stuff still happens when you get out. And we have spent the last decade engaged in stuff that Fs up childrens minds and body, particularly the boys.

  • E_Pluribus_Pluribus

    The movement to test for dangerous and/or beneficial genes is going to grow as tests improve and as China, an authoritarian regime, forges ahead — unconcerned with the kinds of ethical questions that tie Western media and government in knots.

    A January 14, 2014 Daily Mail report is representative: “Chinese firm’s bid to allow parents to pick their smartest embryos.”

    The West will be forced to tag along behind, and tag along it will.

  • bigone4u

    Since the economics of this medical advance mostly exclude blacks, it will provide a small boost to white fertility rates. There’s nothing immoral about more healthy white babies being born. What is immoral is leftist dupes like Sandra Bullock adopting Bantu infants. She and her brainwashed dumb Hollyweird sisters should be having white babies.

    • WR_the_realist

      The left will oppose this sort of Eugenics for the Wealthy vociferously until they can get it subsidized for everyone by your tax dollars.

      • bigone4u

        Yep, they’ll add it into Obamacare and claim it to be a right for everyone.

        • Brian

          Worth it.

  • haroldcrews

    Considering the poor future for low skilled labor it is almost certain that intelligence would be factor selected for in the near future as the genetic basis for intelligence is determined. What parent will want a special needs child or even one of lower intelligence for whom life will be a life of perpetual dependency? Currently there has been a precipitous drop in the numbers of children born with Downs Syndrome. Genetic testing has resulted in the over-whelming majority being aborted.

    Another interesting question is to what extent will the government step in? At some point it will become politicized. Few heterosexual parents I suspect want a child with a propensity to same sex attraction. But homosexuals have considerable political influence and they would oppose using genetic screening to prevent homosexuality. Although at the same time it would allow them to screen for homosexual children. Another aspect considering the government is heavily involved in the medical system is to what extent will pressure be placed on prospective parents to use genetic screening to prevent burdensome diseases. Obviously there will be double the pressure. A healthy person pays taxes and also is not a burden on the medical system.

  • Cairdeas

    What if the bioethicists have no ethics? Then again, who cares? We’ve killed tens of millions of babies, so why not destroy a few embryos?

  • Ella

    If you can prevent a life crippling and painful disease at an embryo stage, why not? They usually test at day 3-5 so we’re not talking about a 14-week abortion. This is the most humane method to stop severe genetic diseases; however, not all people develop the disease in their lifetime and may just carry.

  • Extropico

    It would be an understatement to term as a Luddite an opponent to genetic testing for serious diseases. Damn the torpedoes, full steam ahead!

  • Cairdeas

    “Gina Kolata ….. and getting caught in the rain…..” Oops…that ain’t right. Dis is embarrasin’

  • benvad

    I don’t see the ethics problem. Of you can screen for healthy embryos early on, why the hell not? Don’t even consult with the Vatican on this, they’re concerned with importing metal deficients that are already born.

  • Alexandra1973

    This doesn’t sit right with me at all…I don’t think we need “quality control” when it comes to children. (Assume I’m talking about White children.)

    If my son had been born retarded I’d still love him. As it is, he’s slightly autistic (though I believe it’s not genetic, but rather due to environmental factors) but I love him just the same. Even if I have to take care of him for the rest of his life–I’ll do it.

    No one’s ever promised that life will be easy. Sometimes challenges come our way. Someone here may wind up parenting a child with Down’s Syndrome. Things happen for a reason…we oftentimes don’t see it right away.

  • Nathanwartooth

    “But the procedure also raises unsettling ethical questions that trouble
    advocates for the disabled and have left some doctors struggling with
    what they should tell their patients.”

    Funny that there seems to be no ethical discussions about abortion, but suddenly when you can choose traits for your child it becomes “unsettling ethical questions”.

    If you want genetic engineering to continue in the west, just frame it as the same argument as abortion. If you don’t allow a women free choice to do with her embryos as she wishes, you are a woman hating bigot.

  • E_Pluribus_Pluribus

    Interesting. But there is no PC-driven peer pressure not to choose “the most exclusive preschool.” It’s fashionable — or at least “OK.” But to choose “the smartest embryo”? That will cause serious cognitive dissonance for women in the West. But you probably have indeed identified the advance guard of the West towards a more eugenics-aware future.

  • Michael Mason

    Scientific advancement is just too much for some people. That is how it has been since Galileo’s time and that’s how it will be forever.

  • Strider73

    Dang, I thought I knew just about all those Internet abbreviations & acronyms, but I have never run across “SWPL” before. After doing a search, the best meaning I have found is “stuff white people like.” If that is wrong, please correct me.