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A new treatment technology could change medicine as we know it. Doctors, ethicists, students and faith leaders met in Salt Lake to decide if that's a good thing.

SALT LAKE CITY — “We don’t know what we don’t know.”

That sentiment was shared again and again on Saturday as scientists, religious leaders and students met at the Episcopal Conference Center downtown to discuss the future of gene editing. Participants were seeking answers to tough moral and ethical questions, but many left more confused than they started.

God and Human Suffering: Conversations on 21st Century Genetics and Our Shared Future” focused on a cutting-edge technology, called the CRISPR-Cas9 technique. The editing process mimics something that happens naturally in bacteria, enabling scientists to change plant or animal DNA in order to treat disease or address a genetic condition.

Although the scope of its future applications is unknown, CRISPR-Cas9 gene editing already sparks both awe and anxiety, even among secular researchers, said Dr. Jeffrey Botkin, chief of the division of medical ethics and humanities in the department of internal medicine at the University of Utah.

It may forever change human reproduction, allowing people to select their offsprings' traits or pass on altered genes.

“There’s an element of fear about this technology. It gets to this notion of control over life,” Botkin said.

The Salt Lake workshop invited participants to investigate this fear, updating them on CRISPR-Cas9's current uses and relaying potential concerns. Around 80 people took part in the lectures and group discussions, searching for the right way to "play God" with someone's DNA.

CRISPR-Cas9 "is a tool that can alleviate human suffering like never before," said the Rev. David Nichols, pastor of Mount Tabor Lutheran Church and co-organizer of the conference. "We're still learning how to best use it to maximize potential and minimize harm."

Ethical debates

During his keynote presentation Friday night, Ted Peters, co-editor of a journal on theology and science, shared a cartoon of a horse running away from a cowboy. Science was written along the side of the horse, and the struggling horseman was labeled “ethics.”

The picture depicts typical medical advancements, he noted. Scientists sometimes get ahead of society, embracing a new technology before considering its repercussions.

Bioethicists and, to a greater extent, religious leaders, rarely keep up.

“People representing churches would be even farther behind,” Peters said, motioning to the cartoon.

Since the CRISPR-Cas9 technique emerged five years ago, related research has threatened to become a runaway horse. Leading geneticists have called for public dialogue to keep it in check, asking for help figuring out the proper uses of gene editing.

“Public discussion is important for exploring social impacts, both real and feared,” said a report from the National Academy of Sciences and National Academy of Medicine released earlier this year.

Gene editing could dramatically reduce cases of disorders linked to a single gene, like cystic fibrosis and Tay-Sachs disease. It could lead to new treatment options for conditions like muscular dystrophy, and enable crops to grow in new climates.

“In 40 years as a physician in genetics, I’m not sure I’ve ever seen an advancement that has so much potential to help alleviate disease,” said Dr. John Carey, a professor and pediatrician at the University of Utah.

However, gene editing could also dramatically change our relationship to reproduction, making a baby something to be carefully designed, Peters said.

“The moral issue is whether children become commodities,” he said.

Even if gene editing never enables parents to boost their child’s height or brain power, it may soon have the power to eliminate genetic conditions like dwarfism, which not everyone believes is a good thing.

“Let’s not lose sight of appreciating all of us for our differences. We all can contribute something,” said Kate Masterson, co-owner of Hatch Family Chocolates, who has dwarfism.

The CRISPR-Cas9 gene editing technique challenges everyone to consider what human flourishing means, and then to see if medical decisions can reflect that, Peters said.

“What we ought to cultivate is the strength to (make decisions) with moral integrity,” he said.

Moving forward

If the ethical debate surrounding gene editing should center on human flourishing, then faith communities clearly have a role to play, according to Peters.

“One thing we need to do is to be sure every child is loved whether or not they’re born with a disability or expensive disease,” he said.

But that doesn’t require halting CRISPR-Cas9 research, Peters added, noting that many people of faith feel God calling them to transform the world.

“We should be future oriented and transformation oriented,” he said.

Moving forward, religious communities can help educate the public about gene editing, said Bishop Jim Gonia, who leads the Rocky Mountain Synod of the Evangelical Lutheran Church in America.

"We ought to be the place where challenging conversations can be held in respectful ways. I would love to see our congregations become centers of dialogue on tough social issues," he said.

Botkin gave everyone who participated in the Salt Lake conference a prescription to keep the conversation going, urging them to find ways to include forgotten voices.

"One consistent theme was this notion of engagement. How do we get the public engaged?" he said.

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Botkin, Nichols and Carey will work together to summarize the event for a scholarly journal, passing on the themes of the discussion to the broader scientific community. One attendee joked that a science fiction film script or novel might grab more people's attention, noting that gene editing still feels to many like something from the future.

CRISPR-Cas9 gene editing is exciting and troubling at the same time, a groundbreaking conundrum for the 21st century, said Janet Williams, a genetic counselor and committed Lutheran.

She offered a modern twist Ecclesiastes 1:18 to explain conference-goers' mixed emotions, saying, “In much wisdom is both vexation and satisfaction, and those who increase knowledge increase both sorrow and possibility."