Malakkar Vohryzek, a 43-year-old IT consultant, lives in fear of the sun because of a rare terminal skin condition. Vohryzek’s skin cell DNA is damaged in the presence of UV radiation, causing an abundance of atypical moles that form whenever he goes in the sunlight. Eventually, one of these moles will become cancerous. Vohryzek knows that an early death is inevitable, but rather than live in fear of his condition, Vohryzek has contacted researchers, clinical doctors, biotech companies, and biohackers with a controversial offer.
Vohryzek wants researchers to perform gene therapy, attempting to modify his damaged DNA, in the hopes of treating the disease. To Vohryzek, this treatment offers the potential to prolong his shortened life, but even if the therapy is unsuccessful, he can be comforted by having made a meaningful contribution to scientific advancement. And yet, researchers remain hesitant due to the things we still don’t know about gene manipulation as well as the things we do – incorrect DNA modification causes irreversible damage.
Thus far, Vohryzek has been unsuccessful in finding anyone willing to use him as a test subject. His ability to autonomously choose what to do with his body and what course of treatment to pursue has been denied. Current research protocols paternalistically dictate what’s best for his well-being and where his ultimate interests lie.
Vohryzek argues that even though there is a large amount of risk associated with premature gene editing, he should have the freedom to volunteer as a test subject. Furthermore, the inevitability of his death should change the moral landscape: Vohryzek has very little to lose but a great deal to gain. Surely his unusual case deserves special consideration.
— Discussion Questions —
Should researchers be permitted to use Vohryzek as a willing test subject?
Can Vohryzek ever truly provide informed consent given the specific consequences of these novel gene therapies remain unknown?
Are we justified in maintaining a hard-and-fast rule, or should determinations like this be made on a case-by-case basis? What are the advantages and disadvantages of these approaches?