The Dark Matter of Genetics

It was a chilly Saturday in an already interminably frosty winter. January 2025 found most Ontarians resolutely huddled indoors and rarely ventured outside unless faced with no alternatives. Against the glacial sub-zero temperatures, Chukwunonso Nwabufo traipsed cheerfully toward the looming glass edifice that was the Maja Prentice Theatre in Mississauga after an hour commute from his graduate residence in downtown Toronto. Amidst the bustle of a university event, staffed by student volunteers, he took off his coat, centred himself and went over his notes. Shortly after 1 p.m., he stepped onto a spotlight on the theatre’s proscenium stage and began a well-rehearsed TEDx talk on how new technologies could change the face of drug prescriptions for the better.

ONEDRUG

Nwabufo’s thesis is simple, or at the very least, his talk presents it as such. Knowing a patient’s genetic makeup can help medical professionals tailor effective treatment plans. He presents his audience with one harrowing story to make his case. In February 2023, Dr. Anil Kapoor, a leading Canadian urologist diagnosed with cancer, passed away after taking one dose of a medication that ought to have extended his life. He had been screened for the medication before being prescribed it, but the screening had not included tests for a ‘rare’ genetic variant which would have made the drug toxic to him. But what exactly is rare? Rare from whose standpoint?