Visiting scholar researches the ethics of gene editing

Futuristic advances in genetics are coming faster than we could have ever predicted, and scientific organizations are scrambling to unpack their potential ethical consequences.

Dietram Scheufele, an Annenberg Public Policy Center visiting scholar, was recently appointed by the National Academies of Sciences to a committee that will examine the legal, political and moral ramifications of new developments in human gene editing — such as a new technology called CRISPR, which allows scientists to easily modify the human genome.

Such a process has the potential to affect human genetic engineering and to dramatically refine the way infectious diseases are treated. In the upcoming year, Scheufele’s committee will put together a report containing explanations and suggestions concerning the new technology and its implications for governing bodies and the general public.

“These committees are basically politically neutral committees that really look at the best available science. The report will be reviewed and put out by the National Research Council,” Scheufele said. “One audience of course is politics, but politics will obviously be influenced by a whole host of other things. What we want to do as a society is ultimately a democratic decision, and hopefully the best available science will inform that decision.”

Penn is spearheading the process of making sure the public is well informed about scientific matters — a field called the "science of science communication." The Annenberg Public Policy Center is innovating the way that scientific information is presented so that it enhances public understanding. The center is working on a handbook consisting of essays by various scholars on the topic of conveying scientific results to the public, the first of its kind.

"We’re trying to find the best way to communicate what the scientists know,” said Kathleen Hall Jamieson, the director of the Annenberg Public Policy Center. “We’re doing experiments to determine how you most clearly and accurately communicate that science so that it increases the likelihood that people will ask good questions and as a result will be able to participate in the process of debating policies."

Along with the benefits of such progress come ethical and legal concerns regarding the availability of such technology to the overall populations. According to Scheufele, one of the questions that will probably have to be answered in the U.S. is to what extent such gene editing technology will be covered by general healthcare. Much of the ethical concern surrounds the equity of such treatment, but also the moral issue of artificially jumpstarting life.

“The ethical concerns are do we really want to create something synthetically in the lab,” said Scheufele, speaking of the potential to create a genome from scratch and “create life in the lab." “You can see the Frankenstein parallels and so on and so forth. There are lots of others [concerns], religious in nature and moral, equity related.”

The effort to study this genome editing process and posit regulations has been an international one. The committee itself is made up of specialists from Europe and China along with their American counterparts. More than that cooperation among governments regarding this issue has been widespread, something Scheufele believes to be imperative in enacting solutions.

“If we regulate in the US, it doesn't really matter because people will procreate all over the world. Unless we come up with a global way of dealing with the issue of coming up with regulations, with recommendations, with guidelines, it’s really largely useless, so that’s why there’s that international effort,” Scheufele said. “Everybody realizes how big of an issue it is and how much need there is for collaboration.”

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