Moral guidelines can become difficult to determine when exploring new frontiers of science and technology. When pursuing scientific discovery, how do we know when we’ve gone too far? These challenges were on display when graduate student Amanda Mok led Berkeley Connect Computational Biology students in a discussion of ethical responsibilities related to gene editing.
The discussion began with a reminder that scientists have long faced moral quandaries, as illustrated by cases such as the Tuskegee Syphilis Study, during which scientists repeatedly lied to and withheld pivotal information from the test subjects, acting with racist motives. As a result of this egregious practice, the Belmont Report was created, establishing ethical principles that should guide research on human subjects. Another safeguard that was established was the Institutional Review Board (IRB). Before an experiment, scientists must submit details of their research involving human subjects to the IRB, to ensure that the subjects’ rights are being protected.
There are three pivotal principles for human-involved studies: respect for persons involved, beneficence, and justice. Informed consent is necessary, meaning people are aware of and comprehend what’s happening to them. They also must voluntarily participate in the experiment. These principles are good measures for human experiments, but what about more micro-biological experiments, like gene editing?
Gene editing in embryonic cells is a divisive issue. On the positive side, it helps prevents disease. This can greatly aid many people who suffer terminal or painful diseases. Gene editing is also a permanent fix, versus a drug treatment which is an ephemeral, metabolic fix. However, gene editing for somatic cells may not be permanent for cells that don’t replicate and die. Also, it is difficult to get people to volunteer for testing, as there’s the possibility of scientists making errors, resulting in the incapacitation of the subject. There aren’t enough guidelines regarding gene editing in embryonic cells yet; consequently, the possible risks are unknown.
Students suggested guidelines for gene editing be enacted, like targeting only terminal diseases, like cystic fibrosis. They were then challenged with a gray area — what about dwarfism or blindness? Some people with these abilities don’t have desire for change and are perfectly happy with who they are. There’s also the issue of the authority determining these regulations. Should this be a legal issue or should the scientific world regulate itself? One student spoke up, suggesting it should be legal, because, “Who is going to keep [the scientific world] in check otherwise?” Other students doubted that enforcement by the judicial branch would work, questioning if legal experts would be able to maneuver in such highly specialized, cutting-edge areas.
Gene editing in non-humans was also a passionate talking point for the students. Most students were in favor of genetically modified organisms (GMOs). For example, modified golden rice has more vitamin A and is now used for developing countries where nutrition is lacking. One student remarked that the impact of GMOs is undoubtedly beneficial in that case. GMOs have also been used for animals. Insulin has been produced in pigs’ pancreases, helping those with diabetes. Now, some scientists are interested in producing spider silk protein in goats’ milk, spider silk being immensely helpful in many different fields. However, students voiced concerns about consent for intelligent animals, like dolphins or dogs. As the students’ discussion continued, the complexity of the topic became clear.
Science has the power to save, but also damage. Scientists must constantly toe the line between ethical concern and innovative ideas. Berkeley Connect students brainstormed possible solutions to help eradicate some of the more morally blurry areas. It’s heartening to see the future generation of scientists discussing the ethical dilemmas that they must consider when conducting experiments. These aspiring scientists are already thinking about accountability and how to protect people’s rights while seeking out new knowledge.
Written by Melody Niv, Berkeley Connect Communications Assistant/Blogger