UNESCO Calls for Ban on “Editing” of Human DNA
News Oct 07, 2015
At the close of a meeting at UNESCO in Paris, independent experts of the Organization’s International Bioethics Committee (IBC) published a report “Updating its Reflection on the Human Genome and Human Rights.” In it, the experts argue that “gene therapy could be a watershed in the history of medicine and genome editing is unquestionably one of the most promising undertakings of science for the sake of all humankind.”
But the ICB report cautions that “this development seems to require particular precautions and raises serious concerns, especially if the editing of the human genome should be applied to the germline and therefore introduce hereditary modifications, which could be transmitted to future generations”
The IBC therefore called for a moratorium on this specific procedure, at its meeting, on the human genome and human rights.
Recent advances have opened the door to genetic screening and testing for inherited diseases, gene therapy, the use of embryonic stem cells in medical research and the possibility of cloning and genetic “editing” for both medical and non-medical ends.
“Interventions on the human genome should be admitted only for preventive, diagnostic or therapeutic reasons and without enacting modifications for descendants,” says the IBC, arguing that the alternative would “jeopardize the inherent and therefore equal dignity of all human beings and renew eugenics.”
The IBC reports that rapid advances in genetics are making “designer babies” an increasing possibility, prompting calls among scientists and bioethicists for a wider public debate about the power of science to modify genetically human embryos in the laboratory, so as to control inherited traits, such as appearance and intelligence.
A new genome “editing” technique called CRISPR-Cas9 makes it possible for scientists to insert, remove and correct DNA simply and efficiently. It holds out the prospect of treating or even curing certain illnesses, such as sickle cell diseases, cystic fibrosis and some cancers. But germline editing can also make changes to DNA, such as determining a baby’s eye colour, easier for scientists working with human embryos, eggs and sperm.
A study examining global legislation and practices concerning genetic modification, published by Hokkaido University in Japan in 2014, showed that 29 of the 39 countries reviewed had a ban on editing the human germ line. In 25 countries, the ban was legally binding. The other four had guidelines, while rules in the remaining ten were described as ambiguous.
The report also cautions against the hidden danger of do-it-yourself genetic testing, saying that consumers who tested their own DNA using so-called Direct-to-Consumer (DTC) kits bought online, needed professional genetic and medical counselling to understand and act on the results. Such kits are widely available to consumers to carry out medical as well as non-medical tests, such as testing for ethnic ancestry. The committee called for clear regulations and information for consumers about such tests.
As genome editing technologies advance toward clinical therapies, they are raising hopes of a completely new way to treat disease. However, challenges need to be addressed before potential treatments can be widely used in patients. To tackle these challenges, the National Institutes of Health has launched the Somatic Cell Genome Editing program, which has awarded multiple grants including more than $3.6 million to assess the safety of genome editing in human cells and tissues.