Chinese scientist, He Jiankui, has created the first genetically modified human babies through the controversial process of gene editing. The process of Gene editing functions by changing a person’s DNA. Jiankui’s conduction of this on unborn children is under fire by some (including his country’s government) and supported by others. Many scientists around the world are claiming this treat is not yet safe to practice on human embryos.
In an interview, Jiankui has given his justifications for his experimentation in this debatable field of science. Knowing the expected worldwide ethics dispute, he begins by saying “If we can protect a little girl or boy from (a) certain disease, if we can help more loving couples start families, gene surgery is a wholesome development for medicine.” If this scientific discovery is ever proven safe, could it help children and their parents live a healthier and happier life?
In He Jiankui’s case, he genetically modified twin girls before birth; he used CRISPR-CAS9 to give the children resistance to HIV, a potentially deadly virus. According to the World Health Organization, 36.7 million people were living with HIV at the end of 2016 and 1 million died from HIV related causes. According to YourGenome, a page produced by scientists at the Wellcome Genome Campus, CRISPR-CAS9 functions by introducing a mutation into DNA by an enzyme known as CAS9, which cuts two strands of DNA to allow for replacement of genetic code, and guide RNA, or gRNA, which binds to DNA to guide the CAS9 to the desired part of the genome for editing. If gene editing could potentially give millions of humans, or even all humans, HIV resistance why is it so controversial?
He Jiankui expected the public’s opinions to be mixed and knew he was going to violate some people’s definition of ethical. In an interview he states his four drafted ethical principles justifying his experiments of Therapeutic Assisted Reproductive Technologies.
First principle:
“A broken gene, infertility, or preventable disease should not extinguish life or undermine a loving couple’s union. For a few families, early gene surgery may be the only viable way to heal a heritable disease and save a child from a lifetime of suffering”
According to the New York Times, He Jiankui is under investigation by the Chinese government for “seriously violat[ing]” state regulations by potentially conducting unsafe scientific practices and potential child endangerment. The Southern University of Science and Technology in the city of Shenzhen has gone as far as discharging Juankui from his positions of research and academics at the university. Additionally, an American university, Rice University, has a opened a “full investigation” into a professor’s involvement with Jiankui’s experimental research. This shows that members of the science community in the west have some doubts as well.
Second Principle:
“Only for serious disease, never vanity. Gene surgery is a serious medical procedure that should never be used for aesthetics, enhancement, or sex selection purposes — or in any way that would compromise a child’s welfare, joy, or free will. No one has a right to determine a child’s genetics except to prevent disease.”
Although these are ethical promises, could this technology get into the wrong hands and be used for these vanity-driven purposes? According to Forbes magazine, in the United States alone, the healthcare industry was worth a yearly 3 trillion dollars, and growing. This brings up the question: Could gene editing potentially become a way for the rich to make “designer babies” with desirable physical traits and characteristics? Referring to Jianqui’s claims, Robin Lovel-Badge, a developmental biologist at the Francis Crick Institute in London states, “There’s no reason not to believe him, I’m just not completely convinced.”
Third Principle:
“Respect a Child’s Autonomy. A life is more than our physical body and its DNA. After gene surgery, the child has equal rights to freely live life, to choose his or her occupation, to citizenship, and to privacy.”
He makes this ethical claim, but does this convince critics who claim his implementation of the practice was premature safety-wise and “inappropriate” from the start? Jennifer Doudna, a biochemist at the University of California, Berkeley, and a researcher of CRISPR–Cas-9 gene-editing that Jiankui used says, “I’m happy [He Jiankui] came [to the gene-editing summit in Hong Kong], but I was really horrified and stunned when he described the process he used. It was so inappropriate on so many levels.” Another critic, Alta Charo states, a bioethicist at the University of Wisconsin–Madison “Having listened to Dr. He, I can only conclude that this was misguided, premature, unnecessary and largely useless.”
Fourth principle:
“Genes do not define you. Our DNA does not predetermine our purpose or what we could achieve. We flourish from our hard work, nutrition, and support from society and our loved ones. Whatever our genes may be, we are equal in dignity and potential.”
This principle is considered true by some people, but one unknown essay writer, a member of the public whom these scientific decisions in some way affect since they affect everyone inevitably, has this to say, “It is evident that our genes determine our behavior and thereby define who we actually are. Certain conditions such as schizophrenia have been reported as linked to a particular gene. As a result, anyone carrying this gene is either schizophrenic or has its mild symptoms. Accordingly, these patterns of behavior unique to every individual are direct repercussions of one’s genetical composition.” It can also be argued schizophrenia does not define a schizophrenic individual. Adding to their argument they state, “These differences in hair texture and color, skin complexion, color of the eye, our voices et cetera; is generated to a large extent by our genes.” If an individual claims the person they are in defined by their hair, complexion, eye color, and voice in one way shape or form shouldn’t they be able to stand by that belief?
Legal punishment against He Jiankui is still undecided as it is an ongoing investigation. Discoveries such as gene editing can have great potential and numerous consequences. Individuals concerned, officials or not, will have to voice their opinions and discuss what further actions, if any, will taken regarding this discovery.
[Editor’s note – A Chinese court sentenced He Jiankui to three years in prison for “illegal medical practice”, and handed down shorter sentences to two colleagues who assisted him.]
“[A parent] may not be the director of an ethic center quoted by the New York Times, but they are no less authority on what is right and what is wrong because it’s their [child’s] life on the line.” – He Jiankui
References
- Cyaranoski, David. Nature, CRISPR-baby scientist fails to satisfy critics Retrieved from https://www.nature.com/articles/d41586-018-07573-w
- Essays, UK. (November 2018). Do Our Genes Define Who We Are. Retrieved from https://www.ukessays.com/essays/sociology/do-our-genes-define-who-we-are-sociology-essay.php?vref=1
- Joseph, Andrew. STAT News. Rice University opens investigation into researcher who worked on CRISPR’d baby project. Retrieved from https://www.statnews.com/2018/11/26/rice-university-opens-investigation-into-researcher-who-worked-on-crisprd-baby-project/
- Munro, Dan U.S. Forbes. Healthcare Hits $3 Trillion. Forbes. Retrieved from https://www.forbes.com/sites/danmunro/2012/01/19/u-s-healthcare-hits-3-trillion/#28c1bdc23da8
- YourGenome, UK (December 2016) What is CRISPR- Cas9? Retrieved from https://www.yourgenome.org/facts/what-is-crispr-cas9
- World Health Organization (November 2017) HIV/AIDS. Retrieved from https://www.who.int/features/qa/71/en/
- Ramzy, Austin and Wee, Sui-Lee. The New York Times. Scientist Who Edited Babies’ Genes Is Likely to Face Charges in China Retrieved from https://www.nytimes.com/2019/01/21/world/asia/china-gene-editing-babies-he-jiankui.html
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