National Society of Genetic Counselors

    NSGC Responds to Reports of Children Born Following Germline Gene Editing

    According to multiple reports published on November 26, 2018, He Jiankui of the Southern University of Science and Technology in Shenzhen, China claims to have genetically edited the DNA of embryos during an IVF-style procedure, resulting in the birth earlier this month of genetically-modified twins. The researcher announced via YouTube that he used the gene-editing tool CRISPR to modify the CCR5 gene, with the intent of reducing the risk of progression of the HIV virus if it was transmitted from their father. This research has not been published nor confirmed by external parties. In addition, multiple concerns have been raised regarding ethical violations.

    This announcement highlights the need for expert guidance on the implications of gene-editing and to establish widely agreed-upon norms for pre-clinical and clinical use of the technology. The National Society of Genetic Counselors (NSGC) reaffirms its position on human germline editing, both as an individual organization and as a workgroup member of the American Society of Human Genetics’ (ASHG) position statement.

    NSGC does not support human germline editing for clinical use at this time. Germline editing in human sperm, eggs, or embryos with the intention of creating a pregnancy should be considered only if and when safety and efficacy standards have been established and met.

    Erica Ramos, MS, CGC, NSGC President, states, “The reported research does not follow the expert guidance set forth by NSGC or other experts in the area of germline gene-editing. Irresponsible use of technologies such as CRISPR may have unintended medical consequences for the infants who received the treatment, and undermine support for the appropriate and ethical use of these technologies for patients with diseases where the benefits can be life-saving.”

    NSGC recognizes that gene-editing techniques may be a means to prevent, ameliorate or cure genetic disease. As such, the concerns about risk, or unacceptable uses of gene-editing technologies, must be balanced against the benefits that they may bring to individuals and families affected by genetic diseases.

    NSGC member and genetic counselor at Sarah Lawrence College, Laura Hercher, MA, MS, CGC, a co-author of the American Society of Human Genetics’ (ASHG) position statement, commented, “Germline gene editing for therapeutic purposes may be justified provided the proposed use passes three tests: there is adequate pre-clinical work to establish safety and efficacy; no simpler method exists by which to achieve the same ends, and the goal of intervention is to prevent or ameliorate a condition with serious medical implications.  This case fails to meet either of the first two pre-conditions and is in violation of guidelines for accepted practice.”

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