According to a publication from Charcot Marie Tooth News, biomedical law expert Timo Minssen recently gave a presentation at the New York Genome Center where he discussed the potential ethical pitfalls of gene editing, painting a line between therapy and unfair advantage — alluding to what some people have referred to as “designer babies.”
Minssen is Director of the University of Copenhagen’s Center for Advanced Studies in Biomedical Innovation Law, an educational institution that seeks to analyze the most pressing legal and ethical challenges faced by biopharmaceutical innovators from Denmark, Europe, and around the world.
Somatic Cell and Germline Therapies
It’s important to acknowledge that gene editing has already been used for some time to treat a large number of genetic conditions. Minssen himself noted that the field had still untapped potential in treating conditions like “sickle cell disease, cystic fibrosis and hemophilia.” Somatic cell therapy has been in use for some time, and continues to be relatively uncontroversial. Somatic cells have no involvement in the production of eggs or sperm, meaning only the affected patient is affected by the gene modification.
Germline therapy, or gene therapies that are targeted on eggs and sperm, are much more controversial. Minssen points out that the engineering of embryos, even as a prophylactic, could be a potentially dangerous course of events if the world is unprepared.
The Future is Now
In late 2018, reports broke that Chinese researcher He Jiankui had genetically edited two human embryos to be HIV-resistant. He claimed the therapy was to prevent the children’s (now infant girls) development of AIDS (which their father had), but was subject to almost immediate and overwhelming international scrutiny. Not only had He potentially subjected the girls to potentially unknown side effects, he started the beginning of a new period in human history that we perhaps aren’t prepared for.
“Did He really address an unmet medical need?” Minssen asked of the maligned researcher. Minssen pointed out that a number of effective treatments already exist to control the progression of HIV, and that by subjecting the girls to uncertain risk, He had done more harm than good. He also took the lid off a Pandora’s box of medical technology.
Minssen called for global leaders to address the issue before it becomes more of a problem. However, he cautioned that lawmakers should not become overly restrictive in their control of the technology. Rather, he proposed that additional research and familiarization with the technology take place. If the potential benefits and risks of the process can be better understood, it can be more ethically justified on an individual basis. However, society as a whole needs to establish the boundaries of what it considers to be acceptable genetic editing.
Minssen steadfastly defended existing gene editing techniques that treat the individually affected, and encouraged policymakers and professionals to educate themselves on the differences between treating human disease and human enhancement.
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