Hetty Helsmoortel is a science communicator who has dedicated herself to bringing research breakthroughs to a broader audience. In her recent book “De Geknipte Genen”, she tackles CRISPR: a revolutionary gene editing technology whose applications raise tricky ethical questions. We sat down with Dr. Helsmoortel to discuss her views on CRISPR’s potential and why she feels it is so important for the public to be well informed on this technical topic.
Why CRISPR? What was it about this topic specifically that made you want to write a book?
I think CRISPR is one of the technologies of the 21st century. Judging by what we can already do with it now, 20 years into the century, I believe it will make the top-10 list of disruptive technologies in 2099.
That being said, when CRISPR pops up in the media, it’s often either in an overly positive or negative light. I wrote this book because I wanted to show the people the potential of CRISPR, but I also wanted to educate people so they could make their own minds up about it. Because CRISPR is a complex technology, and the applications are intertwined with ideology, with sociology, with economy and more. People need to understand it so they can be part of the conversation about potential ethical implications and whether they find those acceptable.
So, you wrote this book for the general public?
Absolutely! Because I don’t need to explain CRISPR to scientists: they know. What I really want is for everyone else to know what this technology is all about. If you know how it works on a basic level, you can see the implications of this technology for yourself. Which is important, because it doesn’t matter if you do or don’t understand CRISPR: you will be affected by it.
They say CRISPR could, in theory, cure 89% of genetic diseases. That, to me, is such a game-changer! - Hetty Helsmoortel
There was a Nobel prize winner, Dr. Marshall W. Nierenberg, who said: “Decisions concerning the application of this knowledge must ultimately be made by society, and only an informed society can make such decisions wisely.” He wrote this in 1967, when genetic technology was still in its infancy, but I think his opinion is as true today as it ever has been.
In your opinion, what are some of the most exciting CRISPR applications that are already underway?
My background is in cancer research, so for me the human health applications are front and center. It’s crazy to me that this technology was only discovered in in 2012, and yet we have already initiated the first CRISPR clinical trials in cancer. For science, that is so fast! The first results were just published earlier this month, and though the benefit to patients was limited they were still really promising in terms of safety and feasibility.
Another ongoing trial is aiming to cure a hereditary form of blindness, by injecting CRISPR directly into the eye to correct the mutation. This is the “first-in-human” CRISPR treatment and we will be seeing results in the next few years.
Then there’s the case of Victoria Gray, an American woman suffering from sickle cell anemia. Victoria was treated with CRISPR last year: they took stem cells from her blood, modified them using CRISPR, and reinjected the altered cells. And it worked! Nine months on, and things are looking really good. They say CRISPR could, in theory, cure 89% of genetic diseases. That, to me, is such a game-changer!
CRISPR is a complex technology, and the applications are intertwined with ideology, with sociology, with economy and more. People need to understand it so they can be part of the conversation about potential ethical implications and whether they find those acceptable. - Hetty Helsmoortel
Outside of human health there is also a lot of interesting work going on. Editing crops so that they can be more resistant to the effects of climate change, for example. I don’t like that people say: “these crops will save us from hunger and will solve all our problems”. CRISPR isn’t a miracle fix. But I do think they can be part of the solution. It’s one tool in the toolbox.
Read this previous BioVox article to see how a company is using genetics techniques to create more sustainable seeds.
Fundamental research is another area where CRISPR is proving unbelievably valuable. I was a cancer researcher myself, and 10 years ago when I started out my PhD, I tried to make a cancer model using traditional techniques. It took me two years and it didn’t work. Now, using CRISPR, we can do this work in a few months. The acceleration that this will bring to our understanding of both human diseases and normal human health is incredible.
And if we think ahead? What do you think are some of the most exciting things that might happen with CRISPR in the future?
Honestly, I think we will be able to grow human organs in animals. The research for this is already happening, but the animals haven’t been allowed to be brought to term due to ethical reasons. Pigs with human hearts, for example. It sounds like science fiction, but it does seem to work.
What should we do with CRISPR? Who and what do we want to become, as a species? These are very hard decisions to make and not everyone will have the same view. - Hetty Helsmoortel
I think another important application for CRISPR is in malaria. This disease kills over 400 000 people per year, but scientists have created gene edits that can modify an entire mosquito population, causing it to crash within just a few generations. We have 3,000 mosquito species on earth and only a few of them can transfer malaria to humans. The talk is now over whether or not we should eradicate these few species. The question, of course, is: what will the impact be on the ecosystem?
And if we’re talking about eliminating genetic diseases, there’s also the matter of changing other genes in human embryos. The first case has already happened, where a Chinese researcher altered the genes of several human embryos so the children would be resistant to HIV. This was hugely problematic, for many reasons. But it raises the question: where is the distinction between curing and enhancing? Some things are clearly a disease (like sickle cell anemia), some things are clearly not (like eye color or hair color), but other things are somewhere in between. What about autism? What about color blindness? What about deafness?
I think these kinds of decisions are what we’re facing in the coming years: what should we do with CRISPR? Who and what do we want to become, as a species? These are very hard decisions to make and not everyone will have the same view.
All of these topics are quite controversial. What do you think the major ethical concerns are for potential CRISPR applications?
I think one of the things we’re really struggling with is who gets to decide? Is it the parents, the doctors, the politicians? All of society?
I think it is better to go slow and steady, instead of rushing ahead. Even if it takes longer, it may lead to better acceptance in the long run. - Hetty Helsmoortel
With the malaria mosquitos, the genetic technology is almost good to go, but researchers are still holding off on conducting field trials. Before releasing these mosquitos, local representatives (mainly African researchers) are speaking with the people in the communities where the field trials may take place. Some of these people don’t even have a word in their language for genes, but the scientists are trying their best to educate them about the technology and what it might do. They’re trying to ensure that these experiments will be taking place with the informed consent of the people who will be affected.
That sounds quite different from the way things have been done in the past. Do you think this “conservative method” of informed consent is better, even if it means the technology takes longer to deploy?
I think it is better to go slow and steady, instead of rushing ahead. Even if it takes longer, it may lead to better acceptance in the long run. Because otherwise you run the risk that people really become opposed towards both the science and the scientists (like with GMOs, or climate change, or vaccines). Trying to undo that damage takes more time than it would have taken to just make sure that the public is onboard and accepting to begin with. We should take the time to do these things in a wise and measured way and give everyone a chance to be part of the conversation.
Hetty Helsmortel’s book “De Geknipte Genen” is out now. Header image: Hetty Helsmortel (photo by Stijn Tyteca).
This interview has been edited and condensed for clarity.