Should We Alter the Human Genome? Let Democracy Decide -BB

In November 2018, a Chinese scientist, He Jiankui, caused an international uproar by announcing the birth of two babies whose DNA he had edited using a tool called CRISPR-Cas9. Human germline genome editing—that is, making precise changes in human DNA that can be passed down through generations—has been seen for decades as a line that should not be crossed. This past December, He was sentenced to three years in prison for carrying out an “illegal medical practice.”

Yet, as the Chinese experiment shows, the state of technology no longer bars those who are willing to cross it. He’s experiment was a profound scientific and ethical misstep. Not only did he do it before adequate preparatory studies had been undertaken, but he acted unilaterally, deploying a technology with the potential to affect deeply held beliefs about human life all around the planet. His experiment set a dangerous example for other overly eager scientists. In mid-2019, a Russian scientist proposed a similar experiment.

We cannot blame lax oversight on China alone. The scientist who carried out the controversial first experiment in China was trained at U.S. universities using science and technology developed in the U.S., and he consulted with U.S. colleagues before conducting his study. Yet, so far we have largely let prominent scientists and scientific institutions frame the discussion around genome editing. 

Whether it is ever acceptable to genetically engineer future children is a question for humanity, not for science. As such, governing the future of this technology is a responsibility for democracy. We the people must ask fundamental questions about the value, the integrity and the meaning of human life. Four years ago, the U.S. National Academies apparently agreed, recommending that human germline editing should proceed only after achieving “broad societal consensus” about whether it should be used. The societal deliberation that might lead to such consensus has hardly begun. Nonetheless, in response to the Chinese experiment, the National Academies and the U.K. Royal Society established a commission to develop a framework for a “translational pathway” for editing human embryos in order to produce genetically engineered children. This move prejudges the issue. It takes a question that belongs to all of humanity—should this work be done at all—and delegates to a small, self-appointed committee of scientists and ethicists the right to decide the conditions under which the work should go ahead. Societal self-reflection demands greater humility on the part of science, coupled with the awareness that there are questions science cannot properly pose, let alone answer fully on its own.

Given the leadership role that U.S.-based science has played in developing genome editing, our democratic institutions should take a corresponding lead in confronting questions of governance. Yet, while limits on this type of experimentation are currently being debated in international circles, our elected representatives have mostly turned the task over to nongovernmental expert bodies like the National Academies.

Many other countries have established laws governing human genetic engineering, backed by robust processes of deliberation and legislation. In the U.S., a ban is in place, but a tenuous one: a rider to the FY2020 Agriculture, Rural Development and Food and Drug Administration House appropriations bill that must be renewed annually. This stopgap measure, though important, is not grounded in the deliberation necessary to identify, let alone resolve, the momentous issues that are at stake.

Senators Dianne Feinstein (D–Calif.), Marco Rubio (R–Fla.) and Jack Reed (D–R.I.) have introduced a resolution affirming the importance of this issue. That resolution, which has not yet been brought to the floor for a vote, rightly observes that germline genome editing “touches on all of humanity.” The resolution is a valuable first step, and we urge the Senate to take it—and then to give this issue the democratic attention it deserves.   

The history of biotechnology shows that scientific self-governance is an imperfect mechanism for securing public trust in the integrity of science. This approach may allow researchers to do what they want in the short run, but in the long run it can create more serious problems for science and industry. The effects of too little public involvement in the early days of biotech, for example, have played out for decades in skepticism and distrust surrounding genetically modified organisms (GMOs). No institution in a democratic society governs itself, and science should not be the exception.

Some scientists worry that He’s recklessness will create a “public backlash” against genome editing unless rules are quickly established for how it should be done. This is a misguided justification for rushing ahead. Public trust does not dissolve simply because one scientist takes one wrong step with a new technology. Any powerful technology can be misused, and collective vigilance is needed to make sure that scientists understand and respect important social norms. Broad public discussion helps to inform science about what matters to society and can build a culture of prudent restraint.

Public distrust becomes much more likely when people are shut out of the conversation by an impatient expert community that unilaterally declares what is moral and how far research should go. The Chinese case demonstrates the downsides of allowing that discussion to be framed by those who wish to conduct future experiments. It must include representatives of all those whose lives would be irrevocably affected by efforts to alter the human genome, and that means all of us—parents and children, patients, international citizens, religious communities and future generations

The prospect of genetically engineering future generations touches upon fundamental dimensions of human integrity, meaning and purpose. Manipulating the molecules in our bodies perturbs the ways we relate to one another as social and spiritual beings, reshaping our sense of what lives are worthy of care. If scientists value a “broad societal consensus” on these issues, they should, at a minimum, declare a moratorium on research on germline genome editing and seek the involvement of societies’ representatives in guiding and governing this area of research.

Humankind needs greater scientific and moral clarity on germline genome editing. Achieving it requires inclusive, international, democratic deliberation, supported by our democratic institutions.  Global deliberation should not rush to satisfy science’s demands for speed or to smooth the pathway for wider use of germline editing. When the future of our genetic heritage is at stake, deliberation can afford to be as slow as it needs to be in order to remain open, thorough and inclusive. 

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