The DIY (do-it-yourself) trend continues to grow in popularity these days. With DIY TV networks and websites like Pinterest serving as a hub for tips and ideas, more and more people are embracing the idea of performing tasks themselves instead of purchasing pre-made items or outsourcing. Science hasn’t been left out of the trend, and in recent years has even found itself the center of attention with its own website, DIYBio.org.
The website’s purpose is to give non-scientists the tools and know-how to “hack,” or create their own synthetic biology experiments. The idea is that non-scientists can not only benefit themselves from learning about biotechnology but that it is also advantageous for the general public to have a wider community contributing to scientific progress. Though some DIY-ers work alone, others interact with members all over the world, and a huge community has been built around a shared love of science and innovation. These researchers take themselves and their work seriously, and a code of ethics can be found on the site’s front page—the result of several 2011 congresses in which participants all over the United States and Europe determined rules of governance.
But is this code enough? Research labs are held to ethical standards by their funding sources (such as the National Institutes of Health, National Science Foundation, etc.), and a breach of ethics is usually easy to spot due to the wide visibility of publications. For example, when a group of Chinese researchers used the relatively new and not yet carefully regulated gene-editing technology CRISPR-Cas9 to modify human embryos, the scientific community exploded with concern. Clustered regularly interspaced short palindromic repeats (CRISPR) is remarkable for many reasons. It is extremely fast, requires a fraction of the costs of previous generations of genetic tools, and, most of all, is relatively easy to use. Due to these reasons (and more), the ethics of using this technique on human embryos is highly questionable. After the aforementioned publication, the International Summit on Human Embryo Modification convened in late 2015 to discuss regulating CRISPR, where researchers and bioethicists came to the conclusion that human embryo research is “irresponsible.” Many scientists agree that while turning to CRISPR to help with life-threatening genetic diseases is one of the many goals of genetic modification, too little is known about the technology at this time. In the United States, embryo experiments are currently forbidden for labs with federal funding. Private clinics have fewer restrictions, though are still subject to regulation via the Food and Drug Agency.
So it was a big deal last month when UK researcher Kathy Niaken was granted permission to use the CRISPR-Cas9 system in human embryos. None of these embryos will be used to start a pregnancy, and CRISPR will be used only to study infertility. Niakan stated that knowledge gained from the research will benefit infertility treatment, but she does not aim to use genetic modification to treat patients. The lab applied for the license to conduct such research in September 2015 and will undoubtedly be subject to strict regulations.
And while it is hard to imagine a DIY biologist being able to easily obtain human embryos, the possibility of highly unregulated science remains. What exactly is preventing someone with an online-purchased CRISPR kit from performing the type of experiments the scientific community has deemed too risky? This work certainly falls outside the code of ethics, but these are easy to ignore. A funded research lab has no choice but to follow ethical codes because in such environments the focus is mainly on publishing work. Flouting such rules would result in loss of funding and papers that do not make it past the peer review process.
A 2013 survey from the Woodrow Wilson International Center for Scholars indicated that DIY biologists are relatively harmless and strictly follow their own code of ethics. Yet it is important to stress here that this survey was taken 3 years ago. The breakthrough CRISPR paper was published in Science in 2012, and the materials have become widely available and better known only recently. This makes safety and regulation of CRISPR even more relevant, as tighter regulations are needed not only for federally funded labs, but freelance researchers as well. CRISPR has the potential to do amazing things for the world, but as with any good superhero, it is worth remembering this motto: With great power comes great responsibility.