Patients with more than one mutation pose another hurdle, Dr. Staecker said. “You would have to design a specific editing therapeutic for each one of those spots, so that makes it very expensive from a manufacturing standpoint, and only a fraction of those dominant type alleles would be treatable that way,” he said.
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December 2017One of the foundations of medical ethics is benevolence, … but we have to balance that with the potential risks, especially when you are talking about changing the DNA of future generations. —G. Richard Holt, MD
Ethical Issues
Many bioethicists worry that the rapid pace of gene-editing innovation has occurred without enough discussion about the ethics of the procedure. Although the embryos created by the OHSU group were never intended for implantation, the ability to permanently manipulate the genome points to the possibility of using the technique to create designer babies, raising questions of fairness, social norms, and personal autonomy, said G. Richard Holt, MD, MSE, MPH, professor emeritus and clinical professor in the department of otolaryngology-Head and Neck Surgery at The University of Texas Health Science Center at San Antonio, and member of ENTtoday’s Editorial Advisory Board.
The National Academies of Science, Engineering and Medicine recently published a report concluding that “heritable genome-editing … trials might be permitted, but only following much more research aimed at meeting existing risk/benefit standards for authorizing clinical trials and even then, only for compelling reasons and under strict oversight. It would be essential for this research to be approached with caution, and for it to proceed with broad public input” (Human Genome Editing: Science, Ethics, and Governance. Washington, DC: The National Academies Press: 2017).
Dr. Holt agreed that gene editing has to be approached with a careful eye toward bioethics. “One of the foundations of medical ethics is benevolence—you want to help people struggling with medical conditions, such as hearing loss, sickle cell anemia, and muscular dystrophy, but we have to balance that with the potential risks, especially when you are talking about changing the DNA of future generations,” he said.
“Should this technology eventually turn out to be successful and safe, it will likely be very expensive,” Dr. Holt added. “This may mean that only those able to afford it will be able to use it, which raises issues of social justice—providing healthcare resources without regard to social status and other factors. While it is true that healthcare is not always ‘fair,’ bioethical responsibility requires us to address this issue as a substantive concern with emerging medical technology.”