What are the ethical issues surrounding gene therapy?

Because gene therapy involves making changes to the body’s set of basic instructions, it raises many unique ethical concerns. The ethical questions surrounding gene therapy include:

• How can “good” and “bad” uses of gene therapy be distinguished?
• Who decides which traits are normal and which constitute a disability or disorder?
• Will the high costs of gene therapy make it available only to the wealthy?
• Could the widespread use of gene therapy make society less accepting of people who are different?
• Should people be allowed to use gene therapy to enhance basic human traits such as height, intelligence, or athletic ability?

Current gene therapy research has focused on treating individuals by targeting the therapy to body cells such as bone marrow or blood cells. This type of gene therapy cannot be passed on to a person’s children. Gene therapy could be targeted to egg and sperm cells (germ cells), however, which would allow the inserted gene to be passed on to future generations. This approach is known as germline gene therapy.

The idea of germline gene therapy is controversial. While it could spare future generations in a family from having a particular genetic disorder, it might affect the development of a fetus in unexpected ways or have long-term side effects that are not yet known. Because people who would be affected by germline gene therapy are not yet born, they can’t choose whether to have the treatment. Because of these ethical concerns, the U.S. Government does not allow federal funds to be used for research on germline gene therapy in people.

For more information about the ethical issues raised by gene therapy:

The National Cancer Institute fact sheet Questions and Answers About Gene Therapy offers information on this topic. Refer to Question 12, “What are some of the social and ethical issues surrounding human gene therapy?” and Question 13, “What is being done to address these social and ethical issues?”

Information about the ethics of germline gene therapy is provided in chapter 7 of the publication Your Genes, Your Choices. Scroll down to the section “Germ-Line Therapy.”

The Genetics and Public Policy Center also outlines scientific issues and ethical concerns regarding gene therapy.

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