Abstract
They used to say that a child conceived in love has a greater chance of happiness.
They don't say that anymore.
—Vincent Freeman, Gattaca (1997)
When I was young child growing up in a small town in KwaZulu-Natal in South Africa, I remember wanting to be an archaeologist, reading every book I could find about dinosaurs on rainy days at home. At the age of nine, I wanted to be an astronaut, imagining that the norm of primarily men being sent into space would change in the future in which I would grow up. I had a flair for biological and physical sciences in high school, and even now I can spend hours watching the replica Foucault Pendulum at the Pantheon in Paris. All of the markings of a future scientist were there.
But I went to law school instead.
I was born in the 1980s, some of the most violent years of apartheid, when opposition to the apartheid system was united with mass action from the vast majority of South Africans. The government tried to cling onto power by introducing reforms such as a tricameral parliament, which still entrenched political power in the white population of South Africa but allowed limited political participation to the country's Indian and coloured groups. The majority black population remained excluded, and such reforms were viewed largely as cosmetic from the outside. My parents shielded my siblings and me as best they could from what was really going on around us.
The film Gattaca was released in 1997 when I was still in high school. Andrew Niccol's film presented a vision of the future where potential children are conceived through genetic selection to ensure that they possessed the most desirable genetic traits of their parents. The story of the protagonist is one whose parents opted to reproduce naturally and suffers genetic discrimination as a result. The story stayed with me, and I still recommend the film for the bioethics class I currently teach at law school.
By the time I finished school, the apartheid era in South Africa had ended. Being of Indian descent, I was advised that there would still be barriers in my proposed study of science. Jobs were limited, and most of these would mean having to move far away.
SA Law
So I switched to law, which I studied with the same enthusiasm that I had for science. Just as scientists have the opportunity to change lives through discovery and scientific progress, lawyers also have a chance to improve lives by promoting and protecting rights. When I entered legal practice, I was still reading science books for pleasure, and I wrote short pieces on the impact of scientific development on law, such as surrogacy and preimplantation genetic testing (PGT).
After a couple of years, I joined the faculty at our local law school and started my PhD, focussing on the ethical and legal issues implicit in select uses of PGT. Today, I have the opportunity to tie together science and law as much as I can: I teach law students on topical issues in bioethics such as human cloning and genetic testing, and discuss space law and the Asgardia (“Space Nation”) project with my international law class.
My current research focuses on assisted reproductive technology law. My thesis addressed a legal gap in South African law: while there is existing law that can apply to assisted reproduction and procedures such as genetic testing, there is no specific law regulating the combination of tissue typing with in vitro fertilization to identify a tissue compatible embryo that, if successfully gestated, could provide a tissue donation to a sick sibling. My thesis proposed an amendment to the existing law to insert provisions that would regulate such a scenario and balance the rights of the individual, the potential future child, and the state.
As I neared the end of my thesis, it was hard not to be swept up by the biggest development in the field of science and technology: CRISPR! But I knew of few legal scholars writing and researching in this area. Assisted by my understanding of genetic interventions under international law, I tried to determine how international law would approach gene editing technology, in particular South African law on reproduction and genetics.
I joined the Association for Responsible Research and Innovation in Genome Editing, the South African Society for Human Genetics, and the Human Cell Atlas, providing feedback on the legal and ethical issues inherent in gene editing whenever I could. To some extent, I managed to infiltrate an arena that until now has largely been driven by scientists, researchers, and ethicists (among others). I now sit on an expert panel of the Academy of Sciences of South Africa. There has always been, and still is, a gap when it comes to the relationship that law has with the other disciplines. My objective is not only to participate in global reform of ethical and legal guidelines but also to educate stakeholders as to how we can practically move from ideas to governance and policy.
Today, I write and talk about CRISPR as much as possible. I've debated the ethical issues of CRISPR and thought about its legal regulation. CRISPR has enormous potential to benefit public health, medicine, and agriculture in Sub-Saharan Africa. It represents an opportunity to reduce morbidity from diseases such as malaria, tuberculosis, and human immunodeficiency virus—perhaps even the COVID-19 pandemic—by genetic intervention. CRISPR has already been used to alter the genomes of crops such as tomatoes, and it could potentially be used to create hardy crop species that can better withstand arid conditions, or more nutritious species to feed a malnourished population group.
Gattaca offered a vision of the future where genetic engineering is the norm, not the exception. But the future is here, and we are already, theoretically, capable of creating children who will potential possess a “greater chance of happiness.” This of course, depends of what we identify as happiness, what we identify as ethically justifiable, and where we choose to draw the line. And we need everyone to think about this.
This is our CRISPR story.