Public's interest is crucial in gene-editing discussion

The recent disclosure that Chinese scientist He Jiankui had created the world’s first genetically-edited babies roiled the scientific community on the eve of the Second International Summit on Human Genome Editing. Intended to bring together researchers, ethicists, policymakers, and other stakeholders to engage with questions about human genome editing, He's disclosure — and the subsequent denunciations of his research — have dominated media coverage of the event.

He's use of the gene-editing technique CRISPR not only violated the scientific community’s moratorium on editing the human germ line, but it also violated Chinese regulations that restrict gene-editing experiments on human embryos. While the fallout continues over He’s actions, we should be paying even closer attention to the discussions held at the summit on the science, application, ethics, and governance of gene editing because of the legal and ethical implications of He’s alleged work. Right now, the public needs a better understanding of the science behind this research and the potential social impacts of this rapidly advancing technology, including who will eventually have access to this procedure.

While use of CRISPR in clinical settings is still a long way off, actions need to be taken now to prepare a framework for how it will be used and to determine how it can be economically feasible for those who are not wealthy.

This research occurred in China, but scientists around the world — including the United States — have also been using CRISPR to edit the genes in human embryos with the intent of treating disease and disability. No matter where scientists are performing their experiments, they are supposed to be restricted by regulations that prevent them from allowing the embryo to grow past a certain stage (often only two weeks).

One of the issues that makes He’s work so controversial is that he ignored those restrictions by allegedly implanting gene-edited embryos into a woman’s womb, who carried them to term and gave birth to twin babies. If confirmed to be true, He’s actions demonstrate that gene-editing science has quickly surpassed both the scientific community’s and any government’s efforts to prevent changes to human DNA that can be passed on to future generations.

While the promise of eliminating disease and mitigating disease may seem desirable, the current US regulatory framework is not prepared to handle the legal and ethical implications of embryonic research using CRISPR and gene-edited babies. Even if we were able to address those issues, the US health-care system is ill-equipped to manage this emerging technology. As the science is moving more quickly than our ability to regulate it, the public should be aware of two key concerns: affordability and accessibility.

The United States has the largest socioeconomic disparities in health care access of any wealthy country in the world, and affordability and accessibility issues are worse for women, with approximately one in 10 women in the country uninsured and more women than men reporting that they forgo health care services due to cost. Assisted reproductive technologies like in vitro fertilization (IVF) are already expensive (on average $12,000 per round), and are usually not covered by health insurance.

Because this gene-editing technique must be used in conjunction with IVF, many Americans will be excluded from access because of the lack of affordability. This means that Americans of lower socioeconomic status will not have access to potentially life-saving medical services for their children, further widening the disparities in healthcare between wealthy Americans and everyone else. In addition, if the US government restricts access to gene-editing techniques, wealthier Americans will be able to travel to other countries that have little to no restrictions to access these services.

The real-world applications of these technologies are still far off; the science has to be confirmed, replicated, tested, and then work its way through regulatory approvals before patients would have access in clinical settings. But as scientists, policymakers and other stakeholders meet to discuss how to approach this type of research, the American public must take interest in this issue.

Public input will be crucial to ensuring the affordability and accessibility of gene-editing techniques for all Americans.

- Patricia A. Stapleton, Ph.D., is an assistant professor at Worcester Polytechnic Institute where she also serves as the director of the Society, Technology and Policy Program. Her research focuses on the regulation of biotechnology in two domains: agriculture and assisted reproductive technology.