Aaron Putzke: Genome editing poses questions for society

We now have the ability to intentionally modify the information in every cell of your body. In July, scientists at Oregon Health Sciences University accomplished this task in human embryos. This technology, called genome editing, has given us the potential to alter the future of humankind. Most importantly, it gives medicine innovation in curing genetically related diseases, and the possibility of preventing those diseases from being inherited.

Think about that for a minute. We might be able to prevent the next generation from developing inherited diseases. Millions of lives could be saved every year. Sounds pretty good, right? But at what cost will this success come to us? Should we permanently alter the information in our bodies? Although the technology could be very revolutionary, there are still many unknowns that pose serious risk to human life.

The risks lie in areas such as accuracy and acceptable risk (i.e., how many lives are we willing to risk in perfecting the potential therapies?). Furthermore, although adults can make decisions for themselves regarding this type of genetic manipulation, if we progress to altering the genome of sperm and egg cells, the resulting embryos don’t get a choice in the matter. Is that OK?

Most people agree that curing diseases would be a no-brainer, especially if we can prevent them from being passed on to the next generation. But what about enhancements? If we can make you smarter by changing your DNA, is that fair? What about physical enhancements that make you a better athlete? Should you be allowed to compete in the Olympics as a genetically modified human?

Genome editing technology is easy to use and relatively cheap. We use the same process in my research group to modify genomes of zebrafish and worms. However, the technique is evolving so quickly that in February, the National Academy of Sciences released a report recommending that we slow our march toward human redesign. In 2016, Congress generated a stop-gap measure by banning public funding for research aimed at editing the genome of human embryos.

Billions of dollars are at stake in the race to cure diseases using genome editing. In mid-February, the U.S. Patent Office awarded patents to use the newest form of human genome editing to a group at the Massachusetts Institute of Technology. Globally, scientists are already moving forward with genome editing research in human embryos, and some of the first clinical trials have been approved in the U.S. for curing diseases in adults. But how we regulate this technology, in the U.S. and abroad, will be difficult at best, and disastrous at worst, if we do not engage all stakeholders, including the public.

A final question to consider: Who gets access to the technology? If we can cure debilitating diseases using this technology, do we have a moral obligation to offer this to everyone? Or, if it is cost-prohibitive, do only those who can afford it get to benefit?

The reasons we need to hesitate and create more dialogue around these issues range from scientific to ethical, as we have not begun as a collective society to seriously engage the discussion. Many people are uncomfortable, if not outright opposed, with intentionally creating and modifying human embryos for research. Unfortunately, policymakers are no further along in the discussion than the public. Most of them are not scientists and do not fully understand the technology and its possibilities for altering the fate of humankind.

Although we likely will not see the true benefits of this technology for at least five to 10 years, it is critical that we, as a society, get involved in the conversation. We need to hold everyone accountable in these early days of genome editing. Scientists have an obligation to engage the medical community, elected officials and the public at large with transparency and compassion as we proceed toward a better future. Our policymakers must be held accountable in asking them if they are aware of the technology, what their position is regarding the technology, and how they plan to proceed with regulating the technology.

This is a critical time in the conversation surrounding genome editing in our society. We need to proceed with hope, with caution and with integrity. We all have an obligation to engage the discussion: to learn, to listen and to act. Because if you don’t voice your opinion now, for or against, you will lose the opportunity that few of us get during our lifetime: to genuinely influence policy that will shape the future of human health and evolution for many generations to come.