Scientist He Jiankui shocked the world when he announced he had altered embryos for seven couples during fertility treatment to protect them against contracting HIV, leading to the birth of two twin girls with engineered DNA.
He Jiankui may be charged with bribery and corruption – crimes which are punishable by death in China.
He is under constant watch by armed guards following death threats and imminent trial.
Dr. He trained as a physicist, not a biologist, and was unqualified to carry out the research himself. He used his own £40 million fortune to fund the project and privately recruited highly-trained scientific professionals to carry out the research. The work was against current guideline on ethics and legality in genetics.
He really thought that he was doing good and doing really important for the good of mankind.
The two children, LuLu and Nana, were born in October. They had a modification to have a resistance to infection with HIV, the AIDS virus.
Any medium-sized Invitro Fertilization (IVF)clinic could utilize a CRISPR vector that can be purchased for $100 to replicate the embryo gene edit.
Geneticist He Jiankui claims to have altered the genes of twin girls born this month. He Jiankui presented his work in a forum organized by the University of Hong Kong to discuss human embryo editing.
The highlights are
* the work was thorough
* the consent was done
* the actual genetic change cost component is trivial and most of the cost in this case and for any future genetic modification would be in the multiple genetic tests and screening. It is likely that if this were done routinely all costs would come down. Cost will not be a limiting factor in the developed world.
* the families made the informed decision to use the genetically modified babies
* Geneticist He Jiankui has a personal, ethical and compassionate reason for performing this work. Others can reasonably disagree. It has been put forward that there are alternatives to genetic HIV immunity. There can be sperm washing to enable a safe HIV-free baby. The counter argument is how safe the child will be living with an HIV infected person. The statistic claimed is that there 0.5 to 2.0% chance of transmission after the child is born.
* Embryo selection with genetic screening is an alternative in some cases. However, this is not possible if neither parent has a recessive gene.
Father of the Baby Girls is HIV Positive and Desperately Wanted Them to Be HIV Immune
Geneticist He Jiankui also had personal experience with HIV. He came from a village with 30% HIV infection rates. Parents had to donate children to relatives in other locations in order to prevent HIV transmission.
All of the volunteers had educated backgrounds and were familiar with HIV. All fathers had HIV infections. They were in a community social group who shared knowledge about HIV. They were familiar with the science and pros and cons. There was a one hour and ten-minute pre-informed consent discussion. They were well educated and could read and understand the material. The 21-page informed consent was gone through line by line and paragraph by paragraph. There were two other observers. They were given two rounds of informed consent. The first was informal. The second was personally performed by He Jiankui.
The project had about 30 families. Some dropped out. There are about 20+ embryos created. There is one more woman who is in the early stage of pregnancy. The program has been paused. Geneticist He Jiankui is currently suspended.
Physicist and Genetics expert Stephen Hsu describes the situation at his blog Infoproc:
At one hour and 25 minutes into the video He JianKu claims that the parents were given the option to use unedited embryos for their pregnancy but chose to use the edited ones. This decision was made even after being informed of the existence of a possible off-target edit in an inter-genic region. The possible off-target was not confirmed by later analysis. If true, this has some important ethical implications. The problem becomes one of parental choice and reproductive freedom. IIUC, the father has rather strong feelings concerning HIV (being HIV positive) and the parents strongly desired HIV-resistance in their daughters. Who are we or anyone else to tell the parents whether to use the edited or unedited embryos?