given your previous involvement in the experiment of He Jiankui, I would like to make a proposal to you.
As a genetic epidemiologist, I have looked into the technical details of Dr. He’s presentation in Hong Kong. I am deeply concerned about the two girls and and what the international community could do for the “CCR5 twins” but also for the “PCSK9 baby” that will be born in about 10 weeks.
As the official Chinese investigation report leaves a lot of open question, I suggest that an international commission including also scientists and medical doctors from abroad should examine these children. Very much in accordance to the International Atomic Energy Agency there should a multidisciplinary group be built that is allowed to do on-site visits. While I agree with many other ethicists and geneticists that the children and their parents should not be exposed to the public, I think a group of experts need to examine the children and resequence their genomes to offer them the best care available.
Eugenics is a word many associate with America’s historical bans on interracial marriage, Nazi Germany’s quest for Aryan supremacy, and stolen Australian Aboriginal children. Its connection to China’s one-child policy is less obvious, but no less potent. Children were seen as valuable resources, and when only one child was permitted per family, there was tremendous pressure to secure the optimal outcome … “Deformed fetuses” are encouraged to be terminated in China because people who require extra care and function outside conventional norms are largely viewed as burdens on society and the family. In lower tier cities, disabled children are often hidden from view and afforded little dignity or opportunities for upward mobility. When people with disabilities are not being pitied as subhuman, those who manage to overcome societal judgment and obstacles are then trotted out as inspiration porn for able-bodied people. Many Chinese people struggle to see beyond someone’s disability. The Chinese word for “disabled” is made of up characters that mean “incomplete/broken” and “disease/suffering,” leaving little room for a fulfilling existence.
As a genetic community we owe something to these children as we collected all those genomic data and developed also the tools to modify a genome but we did not clearly voice our concerns of a germline based therapy. Based on a previous analysis I am sure that the two girls will have many more deficits than are currently known.
Knowing more about the details would be a further warning sign of doing such experiments.
Der geplante Tabubruch – eine kommentierte Presse- und Literaturschau.
Wir haben es lange gefürchtet, es wird ein verrückter Einzeltäter sein, der als erster einen genmanipulierten Menschen produzieren wird. Nature berichtet heute mittag über eine Serie von Youtube Videos, die bereits gestern am 25.11.18 hochgeladen wurden.
He Jiankui, a genome-editing researcher from the Southern University of Science and Technology of China in Shenzhen, says that he implanted into a woman an embryo that had been edited to disable the genetic pathway that allows a cell to be infected with HIV … The scientist’s claims have not been verified through independent genome testing or published in a peer-reviewed journal. But, if true, the birth would represent a significant — and controversial — leap in the use of genome-editing. So far these tools have only be used in embryos for research, often to investigate the benefit of using them to eliminate disease-causing mutations from the human germline. But reports of off-target effects in some studies have raised significant safety concerns.
Die Literaturliste auf der Website von Jiankui He ist bescheiden, die schlecht synchronisierten Videos eines radebrechenden kleinen Mannes vor einer Laborkulisse triefen von Sendungsbewusstsein. Ist das Ganze nur ein Fake?
Ich frage mich natürlich, wieviele Embryos er wohl im Lauf der IVF Zeugung zerstört hat (20.000 laut Video), wieviele off-target sites er bei den Kindern produziert hat und was wohl ein zerstörter CCR5 Rezeptor bedeutet? Immerhin gibt es Erfahrung mit der CCR5 Deletion Δ32 eines Berliner Patienten. Sie stellt bei der viralen Enzephalitis und West Nile einen Nachteil dar.
by volume the output of Chinese science is impressive .. The number grew from a negligible share in 2001 to 9.5% in 2011, second in the world to America, according to a report published by the Institute of Scientific and Technical Information of China. From 2002 to 2012, more than 1m Chinese papers were published in SCI journals; they ranked sixth for the number of times cited by others.
A hint of the relative weakness of these papers is found in the fact that China ranks just 14th in average citations per SCI paper, suggesting that many Chinese papers are rarely quoted by other scholars.