“Gene Doctors” is the third and final film in the Biology Film Series, a string of documentaries screened jointly by Haverford’s biology department and Bi-Co’s health studies department. The film focuses on genetic diseases, which are diseases caused by singular mutations in genes. Such diseases are often fatal and, until recently, have been incurable. Thanks to extensive work in the field, medical researchers have found possible methods of treatment for several such diseases. However, these treatments are novel and highly experimental. Dubbed “gene therapy,” these treatments use viruses to directly deliver healthy gene sequences to the disease-causing mutations. The process is complicated, the results are mixed, and, undeniably, the cost of treatment is high.
A testament to the expense of gene therapy, the first case we are presented with is that of Sonia Vallabh. After her mother suddenly died due to initially unknown causes, Vallabh discovered that her mother had a fatal familial disease. As this was due to a genetic mutation, Vallabh proceeded to have blood tests to uncover whether or not she inherited the mutation from her mother. Unfortunately, she had. To add to her misfortune, the disease had no cure. Motivated by her own mortality, she decided to abandon her Harvard law degree to pursue medicine at Harvard Medical School. Her husband, Erik Minikel, also decided to cast aside his city development degree from MIT to study biology at Harvard alongside Vallabh. Today, the two are actively seeking a cure for Vallabh’s fatal familial disease.
The film presents several other patients, all of whom are children, with diseases including inherited blindness, muscular dystrophy, and cystic fibrosis. In each case, the filmmakers explore how the disease affects the child’s life and how gene therapy has helped them stave off fatal consequences. Several of these children are part of experimental drug trials. Without subtlety, the film advocates for the Food and Drug Administration’s (FDA) approval of these drugs, illustrating how the patients’ lives are improved by, and sometimes depend upon, gene therapy. Yet the film fails to acknowledge several issues surrounding gene therapy.
Gene therapy does not cure any of the patients’ diseases—it simply alleviates symptoms. For example, the patient with inherited blindness undergoes a therapeutic surgery that provides her with limited vision. However, the film portrays this vision increase as tremendous, even using the word “perfection” to describe the outcome of the surgery. The film exaggerates the results of gene therapy, creating the illusion that it is 100% effective as a treatment. In addition, the documentary focuses almost exclusively on the recent developments in the field, completely disregarding the time researchers have taken between the treatment’s conception and its actual development. In doing so, the filmmakers do not provide an accurate portrayal of gene therapy and are eager to conclude that gene therapy is the complete treatment for genetic diseases.
Perhaps most importantly, the film overlooks the accessibility of treatment to the public. The film portrays gene therapy treatment as if it is readily available—though experimental—to all patients with genetic diseases. But it fails to discuss how expensive gene therapy is and how likely insurance companies will cover its cost. In reality, only those with the economic means to do so are able to afford the high-priced prescription pills and therapeutic surgeries. Vallabh’s proactivity is unrealistic for most people because of financial restrictions. Unsurprisingly, cures for once incurable diseases are available only to the rich, but the film fails to recognize the classist mentality it adopts in portraying gene therapy as an ultimate cure for genetic diseases.
Overall, “Gene Doctors” educates audiences sufficiently about the science behind gene therapy. However, it represents these breakthrough procedures via a one-sided, classist stance. After all, how many people are able, both financially and academically, to abandon one ivy-league degree to pursue another as Sonia and her husband did? We cannot all be trailblazers in biology. “Gene Doctors” oversimplifies gene therapy and attempts to sell it to the public, avoiding the heartbreaking reality that the majority of people with genetic diseases are unable to afford the so-called “miracle therapy.”
Written by Shayleah Jenkins ’22, English major.
Edited by Matthew Ridley ’19.