Should scientists be allowed to dive deep into an embryo’s DNA and dig out an inheritable disease?
Should parents be allowed to tweak an unborn child’s genes to make their child tall or athletic or smart?
And what would be the consequences of all this on human evolution?
Those are some of the questions facing the medical community and society in general as limited experiments begin in the United States on human embryo gene editing.
An advisory group formed by the National Academy of Sciences and National Academy of Medicine recommended last month that this kind of research should begin.
However, the panel said it should only be done in rare cases where there is no alternative to preventing a baby from acquiring a serious disease or disability.
Ethical questions arise
Research on editing the genes of human embryos is already underway in China and Sweden.
Clinical trials using gene editing to treat noninheritable conditions are already set to start in the United States.
However, editing out inheritable ones like Huntington disease, cystic fibrosis, or Alzheimer’s disease from the genes of human embryos is a bigger undertaking, both scientifically and ethically.
Such editing could eliminate the risk of the disease for the embryos as well as eliminate these conditions for any offspring the embryos might produce as an adult.
But experts say that “germline” editing could cause unintended, permanent effects on human evolution.
It also could open up the ability to edit embryos for enhanced physical or mental characteristics, creating so-called “designer babies.”
In the past year, new, cheaper technologies — particularly the adoption of the more precise gene editing tool CRISPR-Cas9 — have made it more likely researchers will actually succeed at editing human embryos.
That makes the debate over these concerns no longer hypothetical.
The technology could save millions of lives.
Or it could lead to an ever-growing divide between those who can afford to pay for enhanced medical treatments and those who can’t.
How it could affect you
Let’s say you and your partner both have cystic fibrosis with the same mutations.
But you want to have a child who doesn’t have the disease.
Genetic editing could be the answer.
Such embryonic manipulation would involve a small number of couples with specific conditions and preferences and lack of alternatives.
But, as University of Manchester Bioethicist John Harris told National Geographic, if suffering and death can be averted by this research “the decision to delay such research should not be made lightly. Just as justice delayed is justice denied, so, too, therapy delayed is therapy denied. That denial costs human lives, day after day.”
For most couples, there would be other options available, points out Marcy Darnovsky, PhD, director of the Center for Genetics and Society in California.
Some might be able to use an egg or sperm donor or screen embryos with preimplantation genetic diagnosis in a fertility clinic.
There is also the question of what this research will mean not just for our health but for our perceptions of society.
If we can do away with a disease like cystic fibrosis, for instance, how will that affect how we view and treat those who still have it?
What will we be saying about who is “healthy” and who isn’t?
“It’s a way of setting a bar about what kinds of people should be born,” Darnovsky told Healthline. “There are concerns about stigmatizing conditions and reducing the social supports of people who do live with those conditions.”
When it could affect you
All these implications are years or even decades away.
The research that will happen in the near term is more about improving the technology, not modifying embryos intended to be gestated and born.
That germline editing, in fact, is not allowed because of a prohibition on using federal funds to review “research in which a human embryo is intentionally created or modified to include a heritable genetic modification.”
In addition, the advisory panel’s report states that the technology is not ready for human trials.
But it also said using it to edit the precursors of humans — embryos, eggs, sperm — could soon be “a realistic possibility that deserves serious consideration.”
For now, someone who is interested in one day benefiting from embryo editing should undergo carrier testing to see if and how much they are at risk of passing on a heritable disease.
“Go through your [doctor], not one of those companies where you send off your spit in a vial,” said Darnovsky.
She said physicians have the time, training, and resources to make sure you’re fully informed about any conditions or decisions you’ll have to make.
In addition, they can also keep you updated on new technologies and ethical quandaries as they emerge.