Giving Compass' Take:

• Daniel M. Gerstein argues that the ethical debates around human genome editing must accelerate to keep up with - and overtake - scientific progress in the field. 

• How can funders work to advance the ethical debate around human genome editing? How can consensus be built? 

• Learn more about scientific progress to watch in 2019.

At the Second International Summit on Human Genome Editing, the world was awakened to news of the birth of twin genetically engineered babies. The announcement—on the heels of several other recent events—suggests that if moving forward with germline editing is to proceed, it should be done cautiously, only after a scientific, ethical and social consensus can be reached.

In a statement, conference organizers said the work was “irresponsible and failed to conform with international norms.” Concerns included “an inadequate medical indication, a poorly designed study protocol, a failure to meet ethical standards for protecting the welfare of research subjects, and a lack of transparency in the development, review and conduct of the clinical procedures.” At the same time, the conference statement suggested the need for a “rigorous, responsible” pathway that could allow for germline editing when the technology is more advanced.

To date, most of the work on genome editing has focused on somatic or non-reproductive cells, with an interest in gene therapies such as treating diseases caused by mutations, introducing functional versions of genes into a cell, or introducing genes which would inhibit expression of other genes. Such edits would only have targeted effects in specific organs and would not be passed to future generations.

However, genome editing also holds the “promise” of being able to confer desirable traits on offspring through the editing of the egg and/or sperm cells, where such modifications would be passed to future generations. It is this second type of genome editing—germline editing—that is of the greatest concern in this debate. Key issues include the incomplete understanding of the complexities of the human genome, ethical questions regarding the effects on future generations and social pressures or eugenics.

National and international deliberations could form the basis of the work that human germline editing studies. Development of scientific, ethical and social consensus principles for conducting germline editing could help prevent moving forward before prudent guidance is established.

Read the full article about the ethics of human genome editing by Daniel M. Gerstein at RAND Corporation.