Editing Human DNA. Moral and social implications of germline genetic modification

This report is about germline genetic modification (also called germline modification): altering or ‘editing’ the DNA of a human embryo. This technique offers people with genetic diseases new opportunities to have their own genetic children without the risk of passing on the disease.

Unlike somatic genetic modification, germline genetic modification involves altering the DNA in the whole embryo (and therefore in all the cells of the individual), which means that the modified DNA will be passed on to future generations.

In this report the Health Council of the Netherlands and The Netherland Commission on Genetic Modification (COGEM) describe the technical, legal and ethical issues raised by human germline modification. The main questions examined are:

• What is known about the effectiveness and safety of germline genetic modification in the short and long term, both for individuals and for society as a whole? What research is needed to clarify these issues?
• What is the legal and ethical framework for germline genetic modification? What aspects of the existing legal and ethical framework are being stretched by current developments in gene technology?
• How can the government, professional groups and society steer the governance of germline modification in an acceptable direction?

This report is a translation of the report ‘Ingrijpen in het DNA van de mens. Morele en maatschappelijke implicaties van kiembaanmodificatie’ which was published in March 2017