Scientist He JianKu Made a Validly Ethical Choice to Gene Edit the Twins

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

The International Aids Society has personal stories about the stigma of living with HIV.

Health Toll

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.

11 thoughts on “Scientist He JianKu Made a Validly Ethical Choice to Gene Edit the Twins”

  1. No this practice is not ethical. You’ve created an incentive to get HIV so that your offspring can be gene edit to have greater fitness. This creates a market for machine to compete in natural selection of genes and thus will allow machines to edit humans in the interest of machines making more humans to choose the machines and eventually the machines will edit out all features of humanity that aren’t usefull to the machine making a phenotypical revolution and ending all DNA based life in about 10k years.

    Total destruction of all life isn’t ethical and creating biological weapons aka gene design babies is a one way slipper slope. Read the Revolutionary Phenotype

  2. Embryos are microscopic cells without the capacity of thought, emotion or pain. Embryos are no more people than sperm or egg cells are. To put the interests of unfeeling microscopic cells above those of real people is reprehensible. Our only concerns here should be for the safety and well-being of the children and mother.

  3. “Understandably, you don’t want the good intentions of one doctor to ruin the human species.”

    What, are you picturing some genetic alteration which is bad, (thus “ruin”) but somehow has such a Darwinian advantage that it sweeps through the entire population eventually?

    Now, granted, there IS such a thing as “genetic drive”, but I still think this is not a realistic concern. If somebody screws up gene line engineering the worst case is no worse than a few thousand genetic illnesses that already exist. It’s not the death of the human species.

  4. It’s unethical for the same reasons IVF is unethical: a number of embryos are created, their genes are edited, but only a few are implanted, the rest are frozen or discarded. These are twins, but do you really think Dr He only prepared two embryos? Where are these children’s other brothers and sisters?

  5. Procedures using CRISPR create DNA strands that can be inherited. This means altering the DNA of all their offspring. Understandably, you don’t want the good intentions of one doctor to ruin the human species.
    Also, what we call ‘defective DNA’ (and would like to cure) might have a sensible reason from a ‘cold’ evolutionary standpoint. We know very little about how impactful our tampering with DNA would be/could influence survival chances of future humans several generations down the line. Case in point, recent studies for instance demonstrate that ancient unused and seemingly useless DNA is reactivated when the environment changes. So, even seemingly useless bits/for some possibly sickening bits might be good to keep around.
    The actions of the doctor lead to all sorts of pernicious taboo questions, e.g. should we sterilize the altered offspring?

  6. It is deeply troubling. HIV is a manageable disease. Smallpox isn’t a real threat apart from bio-terror.

    I understand his motivations but he is gambling with house money- specifically with the life of the children.

  7. Ethically valid? At best he rolled the dice and one twin has immunity. The other twin may not and other genetic damage may have occurred. This gamble on his part may have set his field back half a decade or more. It’s why you have the backing of a review board and your institution and government which it seems that he did not have. This was highly irresponsible of him and ethically on shaky ground.

  8. According to sources, that gene editing MAY have decreased the possibility of getting HIV but may have increased the possibility of getting cancer

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