FINN HELLER
The Full Story
Cultural Biases and Public Opinion with Gene Therapy and its Misassociation with the Nazi Party
Drawing inspiration from my extended family’s history with genetic illnesses, and my pre-existing interest in genetics, for my Global Issue project, I conducted a case study about cultural biases in gene therapy and its unfair relation to eugenics and the Nazi party. My original idea was to merely outline public opinion for future impact on the industry of gene therapy. Still, I quickly realized that I could do more with my case study by using it to identify the cultural biases surrounding gene therapy and how that affects public opinion and the future. Read about the biases I discovered down below. Read the report on my case study here.
The world changed in 2012, with the discovery of CRISPR-Cas9, which provided the foundation for gene editing, enabling researchers to make specific changes to DNA sequences in a way that was far more efficient and somewhat simpler than earlier methods. But since then, gene therapy's misassociation with playing God and the Nazi Party's eugenic goals, the science of gene editing has been hampered and slowed down by those who fear its potential, perhaps rightly so. But cultural biases are no excuse to simply stop exploring a field of science without further discussing and analyzing what fears create those biases, so that they can be addressed going forward. Doing this will allow us to continue with scientific endeavors in gene therapy while still being cautious and respectful of how people believe it should be used. The first step is learning more about the cultural biases previously mentioned, which I attempted to do with my survey.
Method & Mission
To conduct my case study, I sent a survey out through my school, asking questions designed to gauge personal beliefs and cultural biases. The purpose of my case study was to identify cultural biases surrounding gene therapy and their impact on the public opinion of gene therapy and to analyze how that may affect the future of the genetics and biotech industry.
Disability
One of the most obvious biases in the survey came from Subject 1, who for all of the ethics questions, responded with “should never be done” or “should only be done in the most extreme circumstances”, even when asked about using gene editing to treat or cure cancer, a life-threatening disease that kills hundreds of thousands of people every year. At the start and end of the survey, Subject 1 expressed a highly negative opinion of gene therapy and eugenics, and when asked about any personal factors about them that they believe might influence their answers, they admitted that they believed their being autistic and Catholic may have impacted their answers. This was the first and most obvious cultural bias to be noticed. It can be theorized that this bias is derived from a fear that such technology would be forced onto them and others who are autistic.
Scientific Knowledge
Another, less obvious bias in the survey came from Subject 3. Subject 3 initially stated their personal opinion on gene therapy was that it was an aspect of science for humans to conquer, if researched and used responsibly. Subject 3 also admitted that they believed their degree in higher education and personal experience in the medical field may have influenced their answers. Subject 3 was strongly more positive towards the somatic medicinal uses of gene therapy, as exhibited when they answered that gene therapy should always be used to treat or alter for, HIV, blindness, and cancer. However once the questions became more on the side of somatic enhancement, Subject 3’s answers began to display a far more negative opinion. This was exhibited again when the questions became about using gene therapy on sperm or egg cells to affect future descendants; Subject 3 expressed openness and positivity towards medicinal germline editing, but then expressed extreme negativity towards enhancement germline editing. Due to Subject 3’s educational and medical background, and their responses to other questions, they likely knew more about the field of genetic editing, and therein Subject 3 was able to grasp the reality of some questions better than others, allowing them to visualize every situation in the ethical questions realistically, which helped them to ensure that their answers accurately reflected their beliefs. This bias could also be observed in Subject 4, who was also knowledgeable about the topic and displayed similar answers.
Religion
The final noticeable bias in the survey came from Subject 6. Subject 6 stated that they were uncertain about how they felt regarding gene therapy. Subject 6’s responses to all ethics questions were highly negative, responding to many of the hypotheticals with should never be done or should only be done in the most extreme circumstances. The only hypotheticals that they answered otherwise to were about altering or treating blindness and cancer, and for lowering future descendants’ risk of HIV, cancer, or Alzheimer’s, to which they answered that the hypotheticals were okay to be done in many circumstances. When asked about any personal factors that may have affected their answers, Subject 6 confessed that they were Jewish. This can have created a negative bias towards gene therapy in them due to its unfair and often direct association with the Nazi Party’s discriminatory eugenics practices.
Conclusion
These biases are important to be acknowledged by those working in biotech so that advancements can continue to be made in gene therapy technologies, while still respecting people’s will over how the technology should be put to use
Gene therapy has the undeniable potential to save lives and the absolute certainty of changing the world irreversibly. But where does the line exist? From the results of my research, I’ve learned that giving future advantages to people or future descendants in society is a violation of public will. And perhaps it is people’s biases that make it a violation of public will, but that is still the will of the people who this technology would be affecting, directly or indirectly, and that will deserves to be respected. And although there is an argument to be made about how people’s happiness shouldn’t be the defining factor in a situation that could save or change lives, there is one crucial sentence that must be remembered and regarded with the utmost importance and seriousness as time goes on and biotechnology continues to advance: we will never know where the line is, until we have crossed it.
Sources
Farah Qaiser, "Study: There Is No Country Where Heritable Human Genome Editing Is Permitted, Forbes, October 31st, 2020, https://www.forbes.com/sites/farahqaiser/2020/10/31/study-there-is-no-country-where-heritable-human-genome-editing-is-permitted/?sh=4210c2907617
"Designer DNA" Explained, Netflix
Global Gene Editing Regulation Tracker and Index, 2020, https://crispr-gene-editing-regs-tracker.geneticliteracyproject.org/
Carry Funk and Meg Hefferon, "Public Views of Gene Editing for Babies Depend on How It Would Be Used", Pew Research Center, July 26th 2018, https://www.pewresearch.org/science/2018/07/26/public-views-of-gene-editing-for-babies-depend-on-how-it-would-be-used/
Kevin Davies, "Editing Humanity: The CRISPR Revolution and the New Era of Genome Editing, May 11th, 2021