The WHO Takes on Human Gene Editing

With a recent claim of successful human gene editing by a Chinese researcher, the medical ethics community is on alert: We need to talk on a global scale about how we plan to deal with the potential of human gene editing.

Now, the World Health Organization has entered the fray with a new committee to explore this issue and develop guidance. Arguably, this is something that should have been done before the widespread availability of technology that makes gene editing possible — but better late than never.

This is not the first such committee to form; many nations have their own, and collaborators on an international level have also gathered to discuss this thorny area of bioethics. But the WHO carries considerable weight in conversations about public health, and the creation of this committee is a sign that the agency intends to take gene editing seriously.

The committee includes a diverse array of people like philosophers, mitochondrial disease experts, medical ethicists, attorneys and futurists — though it does not appear to include members of the disability community, which is an interesting omission.

The potential of gene editing is huge: Imagine being able to knock out genes that cause lethal congenital birth defects, for example.

But it’s also a very steep and very slippery slope. Gene editing inevitably raises questions about unintended consequences and how edits might affect someone, or their descendants, in unexpected ways. Many complex genetic issues also don’t involve a single on/off switch. Others can only be “fixed” at great cost when there are easier and more affordable ways to manage them.

Some also fear that gene editing could take on a strong eugenics angle. Who wouldn’t want a child that would be smarter or more athletic, for example? Would parents start to select specific traits like eye color and opt for gene editing that could promote greater height or other characteristics they find desirable? Would humanity lose some natural diversity if people could apply gene edits without controls?

It goes deeper than that, though. For instance, many people view the ability to eliminate congenital disabilities in general as a sign of positive potential, whether they’re talking about mitochondrial disorders that lead to pain, suffering and short lives or trisomies, in which people have three chromosomes when they should have a pair. Down syndrome is a particularly common example of a trisomy.

The disability community is very nervous about these risks, fearing that social attitudes about disability may lead to erasing entire cultures and communities — for example, if there was a specific autism gene that could be turned off, or if mental illness was decided on a single chromosome.

This, too, is part of human diversity — and it’s something medical ethicists will have to grapple with as they make decisions that lead towards a set of guidelines. Researchers will be taking note, as these guidelines could also be used to establish expectations for researchers seeking funding, labs that want to retain certifications and other parameters. National governments and their own commissions may also consider adopting the WHO guidelines, including in legislation and rule-making that could categorically outlaw practices the global community feels are harmful.

Members of the general public who have interests or concerns should bring them up with their lawmakers. Members of Congress have the ability to conduct investigations and hold hearings to learn more about what’s happening on this front in the U.S., especially when it involves federal funding. They can also pass legislation to set standards or direct federal agencies to do so.

Gene editing, like many amazing developments, is a tool with outstanding potential. It shouldn’t be dismissed out of hand because of potential dangers, but it should be wielded with care.

Photo Credit: Getty Images

30 comments

Thomas M
Thomas M25 days ago

thank you

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Celine Russo
Celine Russoabout a month ago

Since everything has a cause, better work on the causes of our problems instead of just "erasing" them like if we don't want to acknowledge them...

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Karen N
Karen Nabout a month ago

I agree with Heather B and Alea C. Anyway what is the point in this?! At the rate humans are destroying animals, the environment and the earth we live on there won't be a future for the human species.

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Mia B
Mia Babout a month ago

Thank you

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Shirley S
Shirley Sabout a month ago

The cutting edge.

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Peggy B
Peggy Babout a month ago

TYFS

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Alea C
Alea Cabout a month ago

It's like drilling in the arctic. One spill and it's game over because we don't have the technology available to clean up the mess. Genetics is not a game to be played lightly.

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Anne Moran
Anne Moranabout a month ago

Shouldn't mess with genetics,, let nature take it's course, or there might be danger down the line... - Handle with care !!

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hELEN hEARFIELD
hELEN hEARFIELDabout a month ago

tyfs

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Heather B
Heather Babout a month ago

Playing God never works out well.

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