We Need to Talk About CRISPR
Neal Baer, editor of a collection of essays on CRISPR, says we must not overlook the dark side of the technology.
| 4 min read | Interview
As a paediatrician taking care of children with sickle cell disease, Neal Baer, a Harvard Medical School graduate, was in awe of the power of CRISPR technologies. Later becoming a TV show writer (for hit shows such as ER, Law and Order, and Under the Dome), Baer realized that the promise of advanced medicine could quickly become a peril, if placed in the wrong hands. This inspired him to compile a collection of essays that asks how far could – or should – humanity develop it. The Promise and the Peril of CRISPR chronicles the human condition in the 21st century, and asks what is more valuable: saving lives, or wielding power? Here he discusses the duality of CRISPR.
What inspired you to compile a collection of essays about CRISPR specifically?
There are lots of reasons. It’s important to know who has access to the data, and the DNA. Is it safe? What are the unforeseen consequences? Will there still be problems once one piece of DNA is addressed, but we have off target results? The human genome is so complex, but these questions need to be discussed.
In 2015, when CRISPR became better known amongst scientists and geneticists, there was an agreement to not use germline editing – changing DNA in an embryo. The academies have changed their view since then by calling for societal consensus in special cases. For example, let's say both parents carry the sickle cell gene. If they want to have a child that doesn't have that trait, they can either do amnio or they can implant. Scientists are using these rare cases as a means to justify moving forward, so I assembled a team of researchers, philosophers, bioethicists, and geneticists to write on these topics. Developing CRISPR is about the human desire to help people who are suffering, but it's also about making money.
The book raises so many fundamental questions about what does it mean to be human? And should we be tinkering with that?
How did you approach balancing the promise of CRISPR's potential benefits with the ethical dilemmas – or perils – it presents?
The promise does have a price tag. A lot of people who need this aren't going to be able to afford it, and insurance companies aren't going to pay for it. There is a conversation about Medicare paying for it – whether it will continue now is a matter for the Trump administration to decide. It costs on average $1.6 million in a person's lifetime in the US to be treated for sickle cell disease, with another about $50-60,000 in out-of-pocket expenses. It's a very expensive disease and a little more expensive to use CRISPR than it is to treat it over a lifetime, but I really reject thinking about it that way because I've seen eight-year-old kids suffer from strokes. Now it’s preventable. They have to go through a lot to get treated, but there have been successful treatments.
Ethically, CRISPR poses interesting questions such as should we be tinkering with our evolution? Well, we do it with the animals and plants we breed. I'm not against that, but the possibility of putting human DNA into animals doesn’t sit right with me. Can we make animals more sentient? Should we? Should we take pigs and make human kidneys in them? I raise these questions and then I ask, who's going to be at the table when the decision is made? How do we use arts, humanities, and the media to tell the stories so that people can be engaged?
What role do you believe policymakers should play in guiding the development and use of CRISPR technology?
Germline gene editing is banned in the United States by Congress, but there is no federal legislation that dictates protocols or restrictions. There is no law or regulation that bans germline gene editing through private funding.
What we need today are conversations. It’s really frightening now with the Trump administration censoring science, particularly if you use words such as “gender,” “sex,” “STI” or “HIV” in your study. It is absolutely unethical to deny access to care, say, to transgender youth, because of an executive order that specifically discriminates against them. Physicians are rightfully worried about losing their federal funding when political decisions place a target on some people.
Where do you see CRISPR research heading in the next decade? Are there any specific areas where you anticipate both exciting and potentially concerning developments?
I'm very excited about what we can do. CRISPR is going to cure horrible diseases and I'm all for that. I am not for changing embryos and using very rare cases as a justification to do that. The one point that I would make is that there are positives with CRISPR, but the dual use is that there are also negatives if scientists go rogue. We have to be very aware that just because there's the promise, it doesn't mean that we have to look at what else is in Pandora’s Box.
