The Mutant Project by Eben Kirksey

The 2020 Nobel Prize of Chemistry was awarded to Emmanuelle Charpentier and Jennifer Doudna, 2 scientists renowned for their work on CRISPR-Cas9, a gene-editing tool for mammalian cells that was first discovered as an antiviral defense mechanism in bacteria. Doudna’s story was later captured by Walter Isaacson in his book The Code Breaker: Jennifer Doudna, Gene Editing, and the Future of the Human Race.

Being a woman in science and that the company I work for sells reagents for doing CRISPR, I felt I should read Isaacson's book to brush up on my knowledge of the history and people surrounding this cutting edge technology. However, upon learning that this book is a 16 hour listen, my heart sank: I don’t think I have the grit to reach the end! Fortunately around the same time, I came across this article by John Dupré who reviewed 4 books on CRISPR. He suggested if there is one book to read, it is The Mutant Project: Inside the Global Race to Genetically Modify Humans by Eben Kirksey. Although this book has 11 hours of listening time, still considered long for my level, I decided to go for it.??

At the start of his book, Kirksey introduced himself as a cultural anthropologist. He stated his goal of writing this book clearly: To map how genetic engineering will transform humanity. He sets out to address these 3 questions that have to do with science and social justice:?

1. Who is gaining access to cutting edge genetic medicine?
2. Should parents be allowed to choose the genetic make-up for their children, as this will have profound implications regarding the future of our species??
3. How much can we change about the human condition by tinkering with DNA?

In order to get the answers, he followed CRISPR around the globe (the story opened with Kirksey himself attending the Second International Summit on Human Genome Editing in Hong Kong in 2018), and interviewed various groups of people such as research scientists, corporate lobbyists, medical doctors, biotech entrepreneurs, HIV patients and activists who are impacted by gene editing. He even went into the lab himself, paying the $1595 tuition fee to attend the NIH Genetic Engineering Course which is run by Millipore Sigma and open to anyone from the public!?In his words, what resulted is a mosaic portrait of the stories of people and concerns on either side of dynamics of power that has emerged with CRISPR.

The other storyline of this book that I find interesting is his portrait of Jiankui He (JKH), the Chinese scientist who created the world’s first CRISPR babies, 2 girls named Nana and Lulu, who were gene edited to be resistant to the HIV virus.?Kirksey was interested in JKH as a person and the social factors that pushed him to do the experiment. He even travelled to the village where JKH was born and spoke to his relatives.?One scene that I found touching was that the villagers, despite being told by the government not to say anything to anyone, still shared with Kirksey what they were able to tell, and as Kirksey was about to leave the village, he was invited to see the He’s prized family pig. One of the relatives asked “Did Jiankui make a big mistake?” Kirskey eventually replied: “He made history by testing out a new technology which nobody else was ready to try. The world will remember this for a very long time.” In some way, I think this is his answer to a question he brought up in the book: “As scientists and doctors are making careers out of CRISPR, who counts as a visionary and who counts as a pariah?” As the old saying goes, only time will tell.?

Before continuing with the story of JKH about his move from a postdoc at Stanford University to a professor at the Southern University of Science and Technology in Shenzhen, and then onto the fateful experiment which ended up with JKH fired from his university job, charged and sentenced to 3 years in prison for evading medical regulations, Kirksey covered the stories of?cancer patients, HIV activists and biotechnology companies that have invested in gene editing technologies as personalized medicine.?In these stories, I think the point that Kirksey wants to highlight is that “gene editing techniques are seeded with value and interests that are economic as well as social. Profit -driven ventures in research and medicine are producing a new era of dramatic medical inequality”.?

For example, Kirksey mentioned the Cancer Survivor Hall of Fame at Penn Medicine Campus. Each person behind the photos had engaged in what Kirksey called a “heroic struggle: rushing past terminal diagnoses and financial barriers in pursuit of life saving experimental medicine”.?However, he noticed one troubling fact:

with one exception, all of the people in the picture are white.

“How come most of the lucky children who are able to go into clinical trials are white??How come there are no black or Latinos children on the wall?”

One possible reason for this is that in the US, Kirksey mentioned that even if one is lucky to be picked to participate in a clinical trial, and there is no need to pay for the drug itself, the patient still has to pay for the transportation, accommodation, and other expenses for routine medical tests that are not covered by insurance. Kirksey pointed out that in the US, many families struggle and even have to mortgage their homes to pay for these!?

Besides big pharma, the other ventures that are trying to cash in on CRISPR are the fertility clinics. Although the mantra is that “CRISPR should only be used to treat unmet medical needs”,?Kirksey revealed that nearly 400 genetic conditions are targeted for elimination based on an online database that is being used by IVF companies in England. Even relatively minor conditions like IBD (inflammatory bowel disease) is on the list! Not long after I read this chapter of the book, I saw an interview between Walter Isaacson and Jory Fleming, a Rhodes scholar at the University of Oxford who is autistic, and published a book called How to Be Human: An Autistic Man's Guide to Life. During the interview, Fleming thanked his mother who has been his long-time support, and I thought how fortunate for him that his mother did not edit out his autistic gene!??Otherwise, he will just live as another ordinary person!

Kirksey ended his book by recounting his meeting with Donna Haraway, and introduced us to one of her writings called The Camille Stories, in which children were genetically modified to have monarch butterflies genes so that they can live with them and take care of the environment. As Kirksey’s book was finished just on the onset of COVID-19 pandemic, he quoted Haraway with these words:

“Genetic modification should get a demotion in ideology and take their mundane place among flawed tools for coping with aspects of wellbeing and suffering. Humanity needs robust public health services, and not exorbitantly priced genetic medicine”.?

To me, this book makes me look at CRISPR (or other cutting edge technologies) from other perspectives which I never thought about before. About the three questions that Kirksey set out to ask at the beginning of the book, here are my musings:?

1. On Science and Social Justice.?Before reading this book, it never came across my mind that these 2 topics can be discussed as a bundle. To me, the discipline of science is using the scientific method to explore and understand things of this world, and during the process of experimentation, to discover new knowledge. There is nothing moral about it. ?On the other hand, justice is about the human condition, not something one can experiment with. I must admit throughout my scientific training, I have never taken an ethics course. After reading this book, I wonder if scientists-in-training should consider taking a course or two on social justice? And what constitutes?justice in the context of medicine??Is justice = equality? If CRISPR opens the door to precision/personalized medicine for the rich who can afford it first, what is wrong if they willingly choose to be the "lab rats"? And as technologies become better when they are more researched on and applied,?will they then become cheaper and available to the general public following the economies of scale??
2. On our ability to change the human condition by tinkering with DNA. While trying to come up with my own position, I find it interesting that what enters my mind is a story that appears very early on in the biblical narrative. In this narrative, the first man and woman, deceived by the Serpent, defied God and ate the fruit from the tree of the knowledge of good and evil. The result: they became like God but they felt shame. I thought how interesting that the writer of this narrative did not say that they were ecstatic and celebrated the fact that they are now like God (won't that be the normal response?) But shame instead!? Maybe some sort of a lesson to heed here.?