Diane Sweeney is a veteran biology teacher at a private Catholic school in California. Her students live in the tech corridor in close proximity to some of the best research institutions in the U.S. Many will be accepted into top-tier schools and go on to hold positions of influence in STEM careers. In planning her courses, Diane knows that it is not enough to adequately cover the science content; she has a chance to impact the moral development of future leaders.
“Even though my curricula are somewhat dictated by the College Board, I make sure I integrate topics of faith into what I teach. I can’t teach about CRISPR-Cas9 gene editing without talking to students about the power for both good and potential harm that this type of tool can wield. Last year, the first patients with sickle cell disease were treated with bone marrow stem cell genetic editing. I showed my students the 60 Minutes news story with Francis Collins highlighting Jennelle Stephenson’s journey to healing. It is a captivating and emotionally heart-wrenching story. Short vignettes like this bring the biology to life and anchor the content in relevance.”
Diane reports that all of her students were affected by Ms. Stephenson’s story, but two students in particular were really challenged at the level of their ethics and values.
One student, Alan Kagiri, grew up on a rural farm in Kenya. He brought it to the class’s attention that the people who need this treatment the most are the very people who cannot afford it. The mutation responsible for sickle cell disease arose in Africa and spread through populations living in malaria zones because carrying one copy of the mutation provides a protective advantage against malaria infection. However, those born with two copies of the mutation get very sick with sickle cell disease. Many of those affected by the disease live in very poor areas. Also, many Africans who were sold into slavery in the United States were carriers of this mutation. African Americans today are statistically more likely than other ethnic groups to be born with sickle cell disease, and they also experience poverty at a higher rate than other groups. This connection that Alan made that day between scientific facts and social realities sparked a desire in him to promote social justice in the pharmaceutical industry. He had been thinking about studying biology with the goal of becoming a scientist, but he turned his attention to studying public health policy. In the fall of 2019, he attended the Ignatian Family Teach-In For Justice in Washington D.C., an experience he called “transformative,” and further solidified his desire to pursue his scientific interests in a way that contributed to the good of the most vulnerable.
Another student who was deeply affected by the sickle cell disease therapy developments was Parinaz Khosravi. She invited Diane to be her mentor for a senior honors independent study project. She wanted to explore more about how CRISPR works, get experience in the lab genetically editing bacteria using CRISPR, and research more about the clinical process of genetically editing human genes to cure disease.
Parinaz’s research brought into even clearer focus the disparities in treatment options that her classmate Alan had pointed out. She notes, “This made me reflect on the role of scientists and their ethical and moral responsibility to come up with treatments that are affordable and accessible to the widest affected population in most need of treatment. Scientists have spent years discovering how CRISPR-Cas9 can be used to cure diseases, namely sickle cell disease, but now the problem at hand is that the patients suffering in Africa cannot get their hands on this almost ‘exclusive’ cure. In short, my project helped me realize the necessary ethical responsibilities of scientists to create treatments and mechanisms that apply to all, and not the privileged few.”
Parinaz also discovered how easy it is for relatively untrained and unaccountable people to become “biohackers.” As a part of her research, she binge-watched a Netflix show called Unnatural Selection which highlights the benefits and concerns that surround this type of gene editing. The show featured a scientist named Josiah Zayner who started his own company with the goal of teaching people how to do CRISPR-Cas9 gene editing. Parinaz bought his kit and set to work learning about the technique.
Using the kit, she was able to alter the genome of the bacterium E. coli to make it resistant to the antibiotic Streptomycin. She was surprised and alarmed to find that with a mail order kit and 3-4 days of work, anyone can make genetically engineered bacteria. Her venture into biohacking impressed on Parinaz the importance of having cautious and ethical people at the cutting edge of these new technologies.
“Prior to my research, I never really knew who biohackers were. Essentially, I learned that they are people like Josiah Zayner, who do DIY science on their own time, in their own spaces. They aren’t regulated and can abuse scientific experimentation in ways they see possible. In Zayner’s case, he sells kits where people can genetically modify bacteria, frogs, yeast, etc. with the use of CRISPR-Cas9. There should be a line drawn somewhere. During my research, I tried to deduce where the line is crossed in both gene editing and DIY scientific experimentation. I concluded that there needs to be established safeguards against the off-target effects of gene editing, as it poses many dangers to our society. DIY science should be regulated and only permitted to those who meet certain requirements. I never really realized how easy it is to pose a possible danger to our society through genetic modification, until I got my hands on a DIY CRISPR kit and made Streptomycin-resistant E.coli.”
Emerging DNA technologies will introduce a whole new world of ethical and philosophical issues. Christian educators have the responsibility and privilege to broach these difficult topics with their students and push them to engage their hearts as well as their minds in thinking them through.
Diane is on the curriculum development team for BioLogos INTEGRATE, a teacher’s resource for helping students explore challenging areas of science from a Christian perspective. Diane brought her own valuable experience in the classroom to the design of the INTEGRATE unit DNA Technologies and Ethics, which will be available soon for the 2020-21 school year. It is our hope that many Christian teachers across the country will follow Diane’s example in equipping students to participate meaningfully in important conversations about the ethical applications of scientific technologies as our society forges paths into new territory.
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