06 February 2017
ByAppeared in BioNews 887
The college's 'points to consider' highlight technological and ethical concerns that it believes should be addressed before genome-editing technology can be used to treat genetic diseases in humans.
'Our goal in this statement is to draw attention to the opportunities for the treatment of genetic conditions, some of the challenges that are being actively addressed, and the ongoing concern about even greater challenges associated with germline, as opposed to somatic, genome editing,' said ACMG President Gerald Feldman.
While developments in genome editing are occurring rapidly, the technology is not perfect, and the ACMG recommends rigorous medical review of the clinical applications. For treating somatic cells in patients, this involves ensuring that the disease-causing variant is corrected to a form that ends the disease, that no other variants are created, and that cells do not pick up epigenetic changes that could create abnormal function when transplanted back into the individual.
For altering the genome of human embryos, this involves preventing off-target effects, ensuring that editing a disease-causing variant has no harmful epigenetic effects, and considering the potential genetic impact on future generations.
The ACMG also addresses ethical concerns about the effect on society of clinical genome editing. It will need to be decided which variants – highly impactful disease-causing variants, minimally impactful disease-causing variants, or non-disease variants – should or should not be subject to genome editing.
The statement concludes: 'In light of these potentially serious and far-reaching concerns, the ACMG Board of Directors believes that genome editing in the human embryo is premature and should be subject to vigorous ethical debate and further refinement of technological issues.
'The ACMG will appoint an ad hoc committee to recommend specific areas where it can contribute to this debate.'