I have covered the technical aspects of the gene editing of the human twin babies, but I have not had a focused look at only the ethics, compassion and noble intentions involved in this situation. I He primary motivatation for doing the work was compassion belief that he was improving the health and lives of people and families with HIV.
NOTE: I know I have multiple articles with slightly different angles on this story but I consider it to be a very important story with implications for gene editing and the future of humanity.
He Jianku conference presentation has the ethical issues mixed throughout the interview and question and answer period starting at about 1 hour and 28 minutes of the video recording. The formal presentation and technical discussion throughout sound to me like the work of a technically competent researcher who did a thorough procedure which had good tests for success and bad side effects.
The relevant personal background of He Jianku was that he lived in a village were almost 1 in three people had an HIV infection. He personally saw parents having to give up their children to relatives outside the village to avoid infecting them.
The case has been made that there are alternatives to producing HIV-free children when the father has an HIV infection. We currently cannot fully clear and cure a person of HIV. There are alternatives to producing an HIV child by washing the sperm of the HIV infected father before inseminating the egg for invitro-fertilization (IVR).
However, He Jianku stated that there is 0.5 to 2.0% risk of the father infected the HIV-free children. You can imagine that they are living together in the same house and the father could have a small open cut or sore of some while handling food, washing dishes or in any other way handling the child. Babies and children could also end up swallowing various things or licking surfaces. The valid concern for the family is that unless the children are made HIV immune then they would be living with the risk of valid risk of HIV infection.
Even the risk of dying from HIV has massively dropped. It is still a top ten cause of death in many countries. Living with HIV is also has significant downsides.
I believe that He Jianku has genuine belief that he is helping the 30 families who were brought into the trial program. He does believe that he is helping the couple who are the parents of these children. He has compassion for these people and their situation. There was a situation which was improved by making the children potentially HIV Immune.
The proper informed consent was obtained. The educated and informed parents made an informed decision to proceed with implanting the edited eggs versus untreated eggs. The parents had a passionate belief that their children would be better and safer with HIV-immunity and that they were avoiding non-trivial health risks.
HIV Virus is Managed and Controlled But Not Cleared
Sometimes HIV medicines can cause side effects. Most side effects from HIV medicines are manageable, but a few can be serious. Overall, the benefits of HIV medicines far outweigh the risk of side effects. In addition, newer HIV regimens cause fewer side effects than regimens used in the past. As HIV treatment options continue to improve, people are less likely to experience side effects from their HIV medicines.
Those with HIV are likely to have a lifespan generally the same as uninfected people and are more likely to die of other causes, such as heart conditions or cancer.
The treatment of HIV is different to the treatment of other chronic diseases, like diabetes and hypertension. For these diseases, drug regimens remain effective even after treatment is resumed following a period of interruption.
Not so for HIV. Forgetting or choosing not to take your HIV medication may lead to the emergence of drug resistance which is a major cause of treatment failure.
Consistently taking your medicine each day and every day will increase your chances of living a long and healthy life free from AIDS.
If you have been taking your HIV combination treatment for at least 2 years, with consistent viral suppression, and your CD4 counts are under 500 cells/mm3 then monitoring is optional. If your CD4 count remains between 300 and 500 cells/mm3 then regular monitoring every 12 months is still recommended.
There is Stigma for People with HIV
In 2017, 940 000 people died from HIV-related causes globally.
There were approximately 36.9 million people living with HIV at the end of 2017 with 1.8 million people becoming newly infected in 2017 globally.
59% of adults and 52% of children living with HIV were receiving lifelong antiretroviral therapy (ART) in 2017.