Should Scientists Toy With the Secret to Life?

Should Scientists Toy With the Secret to Life?

Scientists quickly condemned the Chinese researcher who altered the DNA of at least two embryos to create the world’s first genetically edited babies, defying a broad consensus against hereditary tinkering.

But as The Times reported last week, the global scientific community is divided over what to do next. Should researchers agree to a moratorium on any human genome editing that can be passed down to future generations? Or should they simply tighten existing criteria?

It’s good that the National Academies of Sciences, Engineering and Medicine are planning a global forum to address these questions. But it will be crucial for biologists to seek substantial input from policymakers, ethicists, social scientists and others.

Crispr, the gene editing technique that the Chinese scientist, He Jiankui, used, has enabled scientists to alter human DNA with far greater ease than ever before. It has the potential to remake life as we know it — by preventing devastating diseases, among many other possibilities — and decisions about its future use should be driven by as inclusive and global a dialogue as possible.

Fortunately, there are several ways to broaden the conversation.

Diversify the deciders. Science is a noble endeavor, but it is not entirely pure. Patents and profits and the race against competitors influence individual researchers as well as entire scientific programs. (The Crispr patent, which is currently the subject of a fierce legal battle, is expected to be worth $1 billion at least.) Those influences are not necessarily corrupting, but money and ego have a way of skewing priorities. Dr. He, for example, is said to have gone rogue partly out of a desire to be the first to create “Crispr babies.”

As gene-editing technology advances toward the clinic, scientists will need to do more than listen to the concerns of bioethicists, legal scholars and social scientists. They will have to let these other voices help set priorities — decide what questions and issues need to be resolved — before theory becomes practice. That may mean allowing questions over societal risks and benefits to trump ones about scientific feasibility.

As several scholars have suggested, a “global observatory” — an international consortium of experts from many different fields in many different countries — would go a long way toward making this shift.

Engage the public. Obvious though this may sound, it’s not a given. “There’s a lot of skepticism about the value of public involvement in science and technology decisions,” says Simon Burall, a senior associate with Involve, a British nonprofit dedicated to increasing public engagement in science. That’s too bad. There’s plenty of evidence that having citizens weigh in on proposed policies makes them better and more sustainable. There are also far too many examples of the converse: Leaving the public out of the conversation invites suspicion and mistrust that can be difficult to overcome. It’s easy to dismiss concerns over new technology as the product of ignorance. It’s also a mistake.

Surveys show that most people already support genome editing, as long as it’s directed at intractable diseases and not at the creation of genetically enhanced “designer babies.” Scientists and policymakers stand a better chance of preserving that good will, especially in the face of the He baby scandal, if they give the concerns that do arise a fair hearing. Social media offers an unprecedented platform for doing just that. Crispr’s proponents should start by using that platform to clarify the following:

Scientists are nowhere near being able to make “designer babies.” They have barely figured out the genetic determinants of height; there’s no telling how long it will take them to understand more complex traits, like intelligence, beauty and athleticism. What they are close to doing is using tools like Crispr to repair faulty genes that cause serious diseases. Clinical trials are already underway for hemophilia and sickle cell disease. And these trials involve editing DNA in adult study participants, not in sperm, eggs or embryos; so the results, good or bad, can’t be passed on to offspring.

The bluntest of these tools — legal prohibition — is already being used in the United States, where doctors and scientists are barred from editing human embryos. While such stringent policies may help avoid the muddiness that led to the He scandal, they have a clear downside: They also block the use of less questionable technology. For some desperate families, mitochondrial gene transfer offers the only hope for preventing horrific diseases. But because federal regulators have grouped it with other forms of embryo editing, it’s prohibited in the United States.

There are better, subtler ways to move forward. Lawmakers, regulatory agencies, patent holders, ethics review boards, funding foundations and professional journals all hold sway over how a technology is developed and used. By working together to limit what is funded, permitted or published, they might create a dynamic and flexible process for safeguarding the public while still allowing promising work to progress. It may be impossible to prevent truly rogue actors, but it is possible to slow them down without stopping everyone else.


This article was originally published in The New York Times. Read the original article.

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