Alex Pearlman, a science and technology journalist and bioethicist, presented at the Jaharis Health Law Institute’s Symposium on April 29, 2021. Pearlman’s background is reporting on emerging issues in research, health policy and biotechnology and her work has appeared in numerous leading national and international media outlets, including Stat, New Scientist, MIT Technology Review, The Boston Globe and Vice. Pearlman works as a digital ethnographer and researcher in the Wexler Lab at the University of Pennsylvania Department of Medical Ethics & Health Policy, where she is studying ethical issues in the Community Biology movement during the COVID-19 pandemic. Pearlman also is a research affiliate with the Community Biotechnology Initiative at the MIT Media Lab, where she studies the intersection of the Community Biology movement with issues in ethics and policy, and she is working on the creation of a research ethics framework for use by independent community labs. For the symposium, Pearlman presented on biohackers.
A biohacker is “a do-it-yourself tinkerer, [o]ften participating in self experimentation, gene editing interventions, and agitating against the patent system.” These biohackers, driven by altruistic motives, have “hacked” certain elements of healthcare to provide cheaper options for medication. Some examples of this are the one hour at-home COVID-19 test, open insulin, and the EpiPencil, which is an off-the-shelf answer to increase in price of the EpiPen. Pearlman focused much of the presentation on Glybera, a gene therapy for LPLD, and its pirated counterpart. When Glybera first came on the market, it was the most expensive gene therapy ever at $1 million. Biohackers reverse engineered Glybera using published studies and named the product “Slybera.” Slybera has never been tested as no one will touch the hacked therapy. While biohackers raise many questions of ethics and standards, Pearlman asks, “if there are low cost alternatives, isn’t it in everyone’s best interest to get them resources?”