The previous post talked about a study, published in April 2015, regarding the first gene editing on human embryos. Despite the problems with the technique that this study showed, it triggered an awkward debate in the scientific community.
Concerns are being expressed around the world regarding the use of these innovative, affordable and relatively easy to perform techniques on human germlines. Is it possible to take full advantage of such revolutionary developments for treating people affected with severe genetic diseases while also prohibiting their use for unethical purposes? Members of the scientific and social communities fear that the diffusion of these practices will lead to a new kind of social discrimination between naturally conceived children against genetically modified ones.
The hypothetical consequences of these worries were effectively depicted in the 1997 sci-fi movie Gattaca. I used this movie in my previous post in order to help with understanding this matter and the influence that gene editing will have on our lives. Given that this seems to be a deeply interesting issue not only for scientists, but also for the lay public, how did the scientific community react to the Chinese study?
The need for international regulations on the use of gene editing techniques was already a priority at the beginning of 2015 when a meeting took place in Napa, California, to discuss the scientific, medical, legal, and ethical implications of these new prospects for genome biology. The priorities underlined were to prohibit the use of gene editing in humans while its implications are still a matter of discussion; “create forums in which experts from the scientific and bioethics communities can provide information and education about this new era of human biology”; encourage a transparent use of gene-editing techniques in basic research in order to better understand their potentiality.
On March, Edward Lanphier, Fyodor Urnov and other authors firmly stated that the use of gene editing technologies on the human germline must be temporarily halted because of their unpredictable effects on future generations. “We are concerned that a public outcry about such an ethical breach could hinder a promising area of therapeutic development, namely making genetic changes that cannot be inherited”, they claimed.
On April, Nature Biotechnology asked selected members of the international scientific community to comment on the ethical issues raised by the prospect of the use of CRISPR-Cas9 and the other gene editing techniques on the human germline.
The vast majority of the scientists highlighted the major risks currently associated with these techniques: off-target effects (the genetic modifications generated within regions of the genetic code that are not supposed to be targeted); unanticipated on-target effects (unpredictable effect on cell functions caused by gene editing); and genetic chimerism (the chance that not all the germline cells are effectively genetically corrected generating therefore an embryo with two different DNA sets). These problems were later further discussed by Debra J. H. Mathews, Robin Lovell-Badge and their colleagues.
Others like Jonathan Moreno, Weihzi Ji or Feng Zhang analysed the ethical problems related to the use of these techniques on human germlines. Interestingly some scientists did not consider human germline engineering as a major, inevitable issue, while other did. Craig Venter said that there is “no effective way to regulate or control the use of gene editing technology in human reproduction. Our species will stop at nothing to try to improve positive perceived traits and to eliminate disease risk or to remove perceived negative traits from the future offspring, particularly by those with the means or access to editing and reproductive technology. The question is when, not if.”
These controversial debates were brought to an important meeting that took place from 1 to 3 December at the US National Academy of Sciences in Washington DC, jointly hosted by the US science and medicine academies, the UK Royal Society and the Chinese Academy of Sciences. Nearly 500 scientists, ethicists, legal experts and advocacy groups from more than 20 countries came together to produce guidelines for the use of gene editing in humans.
The summit statement, authored by the 12 member organizing committee, did not condemn experiments on the human germline. Nevertheless, ethical and safety issues should be resolved before embryos can be modified for clinical applications.
However, as reported in Nature, the meeting also brought attention to cultural and social differences that makes the creation of international agreed regulations more problematic.
Bioethicist Renzong Qiu of the Chinese Academy of Social Sciences, for example, noted that a debate on embryos’ human rights is not even part of the discussion in China: “According to Confucius, human being is only after birth”, he said.
Social scientists and ethicists restated that altering human genomes could create inequality and discrimination. The sociologist Ruha Benjamin of Princeton University in New Jersey “worries that the technology will create friction over which traits should be considered disorders”. Doesn’t it sound familiar to those who, as I did, enjoyed the narrative idea of Gattaca?
Thus, do we have to be worried about these scientific advancements and on how they will change our lives? The scientific community is presently facing these concerns and I think we are heading in the right direction in order to regulate the inevitable diffusion of these technologies in our lives and avoid unethical uses. Meanwhile the more we know about these issues, the better we will be prepared when they will enter in our daily life.
Header image: An entire genome code just decoded from an hair and printed on paper. From the movie Gattaca, by Andrew Niccol.