A Crisis in Bio-engineering
We were at first curious when rumors started to spread that a researcher had created a new type baby. We were then shocked to discover it was true. He Jiankuia’s company, Direct Genomics, announced he had removed HIV genes from twin female embryos.
What did He do?
He is the first researcher to proclaim he officially played “God” with the health of other human beings. Investigators found that He selected men, who had tested HIV positive, coupled with female partners, who tested HIV negative, for his experiment. It was also found that He used the gene-editing tools, CRISPR/Cas9, to conduct his illegal experiment under the cover of deceit and explicitly committed banned embryo genetic manipulations and other serious ethical violations during his experiments. He’s deceit included sending in blood samples from HIV negative volunteers to avoid detection, dodging supervision with fake reporting, and presenting fake ethical review certificates while carrying out his work. However, once disclosed, what appeared worse than his careless disregard for human life, was the fact that He pretty much admitted he had risked the future of those twins’ health for fame and glory (Weisberger, 2019).
Why was He wrong?
While few in human genetics research would argue the study of genetic engineering holds great promise for providing acceptable treatments for a variety of human diseases, all agree such experiments play with human genetic destiny. Therefore, any attempts at genetic manipulation research should be done safely, carefully, and will full protections for human rights and dignity (Harris, 1997).
What are the possible consequences?
Way (2001) notes the concerns for the well-being of humans raised after the brutal atrocities committed in Nazi concentration camps during World War 2. But, as Way points out, other human subject treatment violations have occurred since that war including:
- 1940s. Tuskegee Syphilis Study that denied 400 African Americans treatment for a contagious STD
- 1946-1956. Fernald State School experiments where boys were fed radioactive milk
- 1963-1966. Willowbrook Study where institutionalized children were deliberately infected with hepatitis (p. 307).
Way acknowledges that the Belmont Report, issued in 1974, was intended to curb unethical human subject treatment and research by establishing a model of ethical principles that have endured through today (Way, 2001). But, it obviously appears there is still a growing need to ensure ethical principles and practices are implemented and monitored during research to protect human life and dignity.
Ghafoori, Vedahir, and Tehrani (2016) examined literature that discussed the ethical issues surrounding gene therapy eugenics, embryo gene manipulation, and bioethics to evaluate real and potential challenges and disadvantages. The ethical considerations of honesty and integrity in research, analysis, and reporting were also examined. After first defining genetic manipulation as “a field of human knowledge, where genetic engineering” inclusive of “a set of methods for isolation, purification, import and expression of a specific gene in the body of a host which ultimately creates a particular trait or gene product in the host’s body”,
Ghafoori, Vedahir, & Tehrani argues human genetic manipulation could hold the secret to the effective treatment of a multitude of human diseases (p. 35).
However, Ghafoori, Vedahir & Tehrani also found documented incidents of fetal aggression including prenatal viral infections, injuries, miscarriage, and mortality associated with genetic engineering research. The researchers also infer genetic engineering and gene manipulation could lead to cloning and bioterrorism. Further, Ghafoori, Vedahir & Tehrani identified several ethical challenges, such as the rise of genetic engineering monopolies, discrimination in affordance, and public and private interest conflicts, within the field which may be unavoidable. For these reasons,
Ghafoori, Vedahir, & Tehrani concluded, while embryo genetic manipulation may hold the promise of treatments for curing cancers, thalassemia, hemophilia, cystic fibrosis, and other systemic health conditions, such research must be controlled for “ethical, legal, religious, social, and medical considerations” (p. 36-45).
What’s to be done?
The need for ethical controls and monitoring of gene manipulation experiments brings us back to He Jiankui’s new babies. The body of knowledge left no doubt they were furious. Marcy Darnovsky, Directory of the Center for Genetics and Society said,
“If true, this amounts to unethical and reckless experimentation on human beings and grave abuse of human rights. We wish the best for the health of thee babies, but strongly condemn the stunt that threatens their safety, and puts the rest of us at risk. Throwing open the door to a society of genetic haves and have-nots undermines our chances for a fair and just future. Policy makers, scientists, and public interest groups around the world have called for a moratorium or ban on altering the genes of future children and generations. He’s experiment violates the closest thing to a policy consensus we have. It would be illegal in dozens of countries” (“Claim of Genetically Modified Babies: If true, grave abuse of human rights | Center for Genetics and Society,” n.d.)
The Belmont Report specifically outlines ethical principles for:
- Respect for persons. Respecting individuals by allowing them the free will to participate as human research subjects autonomously;
- Beneficence. Respecting individuals by taking steps to maximize the benefits and minimize the risks of harm during human research experiments; and
- Justice. Treating people equitably regarding access to both the burdens and benefits of human research studies (United States. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1978)
Despite these globally established and accepted principles whose purpose is to protect human research participants, He Jiankuia engaged in irresponsible illegal embryonic gene manipulations and committed unethical human protection violations associated with both the cardinal principle of “do good” and the Hippocratic oath of “do no harm.” Disturbingly, He is accused of violating these core ethical principles and engaging in deceptive unethical research practices mostly in the pursuit of riches – not for the benefit of humankind.
What about the future of those poor little baby girls?
Only time will tell. In the interim, we can only hope that global policymakers and other stakeholders realize the time is now for imposing penalties and punishments for the careless disregard of human life, safety, and protections during experiments.
Our role is to keep hope alive.
Chan, D. K. (2015). The Concept of Human Dignity in the Ethics of Genetic Research. Bioethics, 29(4), 274–282. https://doi.org/10.1111/bioe.12102
Claim of Genetically Modified Babies: If true, a grave abuse of human rights | Center for Genetics and Society. (n.d.). Retrieved from https://www.geneticsandsociety.org/press-statement/claim-genetically-modified-babies-if-true-grave-abuse-human-rights
Ghafoori F, Vedadhir A, Golian Tehrani S. Ethical Issues of Embryo Genetic Manipulation. Med Ethics J 2016; 10(36): 35-45.
Harris, J. (1997). ” Goodbye Dolly?” The ethics of human cloning. Journal of Medical Ethics, 23(6), 353-360.
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, B., MD. (1978). The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research.
Slater, R. B. (1993). Playing God with the human body. Business & Society Review (00453609), (84), 68–69.
Way, W. L. (2001). On the Protection of Human Subjects. Family & Consumer Sciences Research Journal, 29(4), 307. https://doi.org/10.1177/1077727X01294001