Clustered regularly interspaced palindromic repeats, also known as CRISPR, is a gene editing technology that has shown promise in treating and potentially eradicating terrible genetic diseases like hemophilia, sickle cell, and cystic fibrosis [1]. However, with the acceleration of this technology ethical issues are starting to come to the forefront of the conversation. Editing people's genes has the potential to harken back to the times of Francis Galton who argued that society should be pushing marriages between the most intelligent and fit of society [2]. As this technology continues to outpace the legal and ethical discussion, it is critical to have a thorough conversation as a scientific community as to what is acceptable in this field.On November 25th, 2018, Dr. He Jiankui announced to the world that his team successfully created the first genome-edited babies. Lulu and Nana were twins born to an HIV positive Dad and an HIV negative Mom with embryos that were made resistant to the M-tropic strain of HIV [3]. Dr. He's research was unprecedented, and it was met with near unanimous condemnation from both the Chinese scientific community as well as the world at large. The outrage in the community brings up an interesting ethical discussion on whether the suffering of a small group of people for the greater good is acceptable. Act-utilitarianism discusses this in depth by saying that things are ethical and virtuous if the experiment has a net positive on society. However, those that champion rule-utilitarianism would shout act-utilitarianism down by saying we must follow rules even if the exception would be beneficial to the rule breaker [4].Analyzing Dr. He's actions through the lenses of act and rule utilitarianism, it offers different perspectives on the ethical implications of his actions. According to act utilitarianism, proponents might argue that his practice was successful in conferring resistance to HIV and could potentially benefit the individuals involved by preventing them from contracting the virus. However, critics might argue that the 'potential' benefits were speculative, while the harms, long-term or immediate, were significant. The lack of transparency raises concerns about the well-being of the individuals involved and the broader societal implications of human germline editing. The rule utilitarianism perspective might argue that Dr. He's actions violate fundamental ethical norms governing human experimentation and genetic manipulation. On the other hand, one might contend that rigid adherence to rules can lead to suboptimal outcomes when exceptions could result in greater overall happiness [4]. Under this lens, the breach of ethical principles outweighs potential benefits, given the risks associated with human germline editing. This paper seeks to explore how a middle ground can be found between shifting society towards eugenics and the amazing potential that gene editing has on increasing lifespan, decreasing suffering, and improving quality of life for tens of millions of people across the world. Analyze this specific case from multiple perspectives is especially important because following Dr. He's prison release in April 2022, he stated that he would continue his practice [5].
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Bolden et al. (2024) studied this question.
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