Updated On Feb 25, 2022
This information is meant to be used for educational purposes to inform providers, patients, and genetic service delivery stakeholders about genetics policy topics. Sharing of information, resources, or policy statements is no way an endorsement of stated positions by NCC.
For more information on gene therapy, including a discussion of the ethics surrounding gene therapy, please visit the MedlinePlus website. MedlinePlus is maintained by the National Institute of Health, U.S. National Library of Medicine.
Genetic technologies, such as genome therapy, raise practical and ethical questions. Some worry that these technologies could cause more harm than good. For example, if a gene is introduced in the wrong place in a person’s genetic code, it could cause other genes to not function anymore. This could cause larger health problems than the one it was deployed to correct. One such case occurred in 2003, when the FDA had to halt a clinical trial on X-linked severe combined immune deficiency disorder (SCID) due to it causing leukemia; more information on that trial can be found here.
As explained in the MedlinePlus article above, some worry that these technologies could be used for non-health related reasons. For example, could people use gene therapy to increase height simply to make someone a better basketball player? How does one draw a line between permissible vs impermissible gene therapy? Whose right is it to make these decisions?
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