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Laura Seitz, Deseret News
Nikki Williams' daughter, Eliza, seemed perfectly healthy at birth, but at about 18 months started regressing. She has a rare and terminal illness that takes an active infant back in time to helplessness, although intelligence remains intact.

For Nikki Williams, having a second child was a high-stakes gamble.

Eliza, her first, was born with metachromatic leukodystrophy, a genetic disorder that deteriorated her ability to move or communicate and would eventually lead to her death, at age 10, in July last year. The odds of living through the same nightmare were at least one in four.

"We wouldn't have ever changed having Eliza. We loved her just the way she was," said Williams, 36. "But if there was something we could do to avoid the disease, we wanted to at least try."

The couple spoke with loved ones and family friends, considering the risks of natural reproduction and debating adoption. As members of The Church of Jesus Christ of Latter-day Saints, they also spoke with faith leaders and fellow Mormons, deciding to pursue in vitro fertilization with preimplantation genetic diagnosis, which ensured that their second child, Caroline, would not have the disease.

"We wanted a healthy baby. That's all I cared about," Williams said.

For many people, religious belief and parenthood are intertwined. Faith teaches couples like Williams and her husband, Callahan, to long for the joy of raising children. It also comforts them when unhealthy babies arrive or don't survive, and informs their decisions on whether to use medical advancements to prevent defects and disease.

The scientific community is aware of the relationship between religion and reproduction, and the idea that some techniques can be equated with playing God. That's why the National Academies of Sciences, Engineering and Medicine has invited religious critiques of the latest gene editing technology with the potential to forever change human life.

Once achieved in a human embryo, CRISPR, pronounced "crisper," would enable scientists to isolate and correct the genes linked to genetic disorders. Its powerful implications brought leading geneticists together in Washington, D.C., in December. They discussed the technology's promise and the risks associated with gene editing, including to unborn future generations who would inherit whatever modifications their parents received.

Before continuing with controversial CRISPR research, scientists will consider how doctors, patients and even people of faith envision the future of genetic technologies, as noted in a statement released at the end of the academies' gene editing summit.

Religious communities can struggle to respond to scientific advancements as they happen, but the coming months provide an invaluable opportunity for people of faith to share insights about life's meaning, the purpose of suffering and the dignity of all humans with scientists who are now seeking out their advice, according to experts who study religion's relationship to genetics.

Within the world's religions, "you've got a conversation that spans at least 3,000 years about what it means to engender life within a family relationship and what our obligations are to future generations," said Ronald Cole-Turner, a Pittsburgh Theological Seminary professor who attended the summit.

Problematic potential

CRISPR, an acronym for clustered regularly interspaced short palindromic repeats, replicates a process that occurs naturally in bacteria to target and correct the segment of someone's genetic code linked to a disease or inherited disorder. Although applications are still being developed, scientists predict CRISPR could soon be used to modify unhealthy embryos and treat serious diseases like cancer.

Unlike in vitro fertilization, in which scientists selectively implant healthy embryos into a woman's womb, CRISPR would enable all embryos to be altered so they no longer carried problematic genes. The process affects the germline, meaning future generations would carry the same genetic modifications.

With CRISPR, scientists believe they could eradicate genetic disorders like Down syndrome or Tay-Sachs disease in embryos and, eventually, treat diseases like Alzheimer's in adults. The genetic technology has life-changing potential, and yet many people worry it takes science too far, said Ted Peters, co-editor of the journal, "Theology and Science."

Many people's hesitations stem from practical concerns about CRISPR's accuracy, he noted. Early experiments have shown that the technology sometimes skips sequences it's supposed to edit, and there's also little known about mutations that could occur in people who inherit modifications.

"Suppose we edit the human genome to get rid of the gene for Huntington's disease. We'd pat ourselves on the back," Peters said. "The problem is we don't know whether that particular gene works in concert with other genes to produce something positive. By eliminating Huntington's, we might have screwed something else up."

As December's international summit illustrated, there are also ethical concerns about CRISPR, which include fears about changing the nature of being human or creating a society in which people who can't afford genetic editing suffer disproportionately. The technology requires scientists to discuss whether people have a right to be born with an unmodified genetic code, Cole-Peters noted.

Religious resistance

Scientists don't always mention religion by name when discussing the ethics of genetic technologies, but it's often just under the surface, influencing how people understand the purpose of reproduction, suffering and human life, said John Evans, a professor of sociology at the University of California, San Diego, who participated in the summit.

"Religion has been one of the main ways people talk about the issues at stake here," he said.

For example, CRISPR is celebrated for its potential to reduce the suffering related to genetic disorders, but, considering the risks associated with making permanent alterations to the germline, scientists are questioning whether preventing suffering is always laudable, Evans said.

Suffering and its purpose have been discussed for centuries in faith groups, both at theological and personal levels. It's through faith that parents like David Simonsen face the challenges of raising a child with a genetic disorder.

Sophia, Simonsen's 5-year-old daughter, has Down syndrome. She doesn't fit in with other kids as naturally as her five older siblings, but the family celebrates her smiles and readiness to forgive.

"God gives us challenges and we have to meet those challenges head on," said Simonsen, 45, a licensed marriage and family therapist in Olympia, Washington.

Beyond debates about suffering, commentators have wondered whether genetic technologies like CRISPR turn medicine into "playing God," citing the risks associated with editing the germline. Although genetic testing and editing offer hope for families who are aware of how heartbreaking it is to live with a genetic disorder, the technologies can also feel like an insult to people like Eliza, making them seem like a mistake, Williams said.

"I would never want anyone to feel as though Eliza was not good enough the way she was. She was, and still is, an incredible gift to us," said Williams, who lives in St. George, Utah. "We chose (to use genetic screening) because her disease is essentially a death sentence."

The power to forever alter future generations is difficult to grasp, leading scientists to pause and reflect on whether humans are meant to have that capability.

By naming faith leaders as one of the key groups to target during their period of public outreach, gene summit participants acknowledged the insights religion offers about the purposes of medical interventions. In the effort to invite more voices to the debate, however, leaders may have also paved the way for even stronger resistance to CRISPR technology, given that religious communities are more likely than other Americans to disapprove of genetic modifications, according to an October survey from Pew Research Center.

Fifty-one percent of white mainline Protestants, 62 percent of white evangelical Protestants, 56 percent of black Protestants and 54 percent of white Catholics say altering a baby's genetic characteristics to reduce the risk of disease "takes medical advances too far," compared to 50 percent of all U.S. adults, Pew reported.

Although religious texts like the Bible, Torah or Quran don't mention genetic editing by name, some faith groups already ban better known reproductive technologies, such as in vitro fertilization. Roman Catholicism and evangelical Christianity don't support processes that leave some embryos unused, because they teach that life begins at fertilization, Peters noted.

"They're concerned about what you're throwing away and about who you're throwing away," he said, noting that, so long as CRISPR involves editing embryos outside of a woman's body, it's going to face challenges from some religious leaders.

Responding faithfully

Pew's findings and previous faith-based objections to reproductive technologies support people's assumption that religion is opposed to many forms of scientific advancement, Cole-Turner said.

However, he and others involved in debates over the use of CRISPR don't believe a faithful response to gene editing has to be anti-science. Faith communities may worry about interfering with natural reproduction, but they also support advancements that lead to less suffering in the world.

"I think faith leaders and religion researchers will have a surprisingly positive effect on the debate, in the sense of moving it forward," noted Cole-Turner, who is also an ordained minister in the United Church of Christ.

He highlighted how many of the world's religions emphasize compassion and the need to heal those who are in pain. Those teachings could pave the way toward acceptance of genetic technologies like CRISPR, he said.

"If we stretch (the obligation to heal others) to future generations, we must ask, 'How can parents use this technology in an appropriate way to heal, preemptively, future generations?'" Cole-Turner said. Many people of faith "would take that (possibility) seriously."

Responses to CRISPR will be complex and varied, even within the same faith groups, he added, noting that someday it may be possible to edit cells within adults, thus eliminating the need to manipulate embryos in a lab.

"Could you modify the cells in a man's body that produce sperm … so that the man in question would not be exposing his descendants to a particular genetic condition? That seems technically feasible. If not now, then within the forseeable horizon," Cole-Turner said.

In ongoing discussions of the ethics of CRISPR, faith communities have an opportunity to draw on the richness of their tradition and approach the situation from a variety of angles, Peters said. Observers might anticipate doctrinal or theological arguments, but religious leaders can also take a pastoral approach.

"Gene editing isn't just a science for the laboratory on the other side of time. It's going to influence families in the midst of all of our congregations," he said.

What does it mean to be human?

Over the next several months, members of the scientific community who took part in the International Summit on Gene Editing will be soliciting opinions on CRISPR from non-participants, as they work to determine how the genetic technology should be approached in future research.

Cole-Turner and Peters are both hopeful about the role religion experts and people of faith will play in these conversations, highlighting the potential for a meaningful discussion about the value of human life.

"What scientists will find is that religious people bring a level of thoughtfulness and seriousness about life and its engendering within the context of family relationships," Cole-Turner said.

In the process, people of faith can emphasize the dignity of humanity in all forms, Peters said, noting that technologies like CRISPR threaten marginalized communities without access to those advancements and the inherent value of life.

"If we end up with a culture that is pressing for perfection, (people will) have disdain for the children who are born less than perfect," he said. Religion reminds us that "culture needs to constantly celebrate all human beings, regardless of their perfection or their potential."

Rejection of children with Down syndrome already occurs in many places around the world, Simonsen said. This fall, he and his wife, Lu, adopted Jayda, a 4-year-old Polish girl with Down syndrome, who was given up by her birth parents because of her condition.

Simonsen said he understands the temptation to eliminate disorders that lead kids to grow up different from others their age. But he's witnessed firsthand the blessings these differences bring.

"I don't think (CRISPR) would lead to an ideal world. I think the world would miss out on the uniqueness of a Sophia, a Jayda and many other kids I know," he said.

"Knowing what we know now, we wouldn't change" Sophia's condition, Simonsen added. "But if we didn't know, we, unfortunately, would have considered it."

Email: kdallas@deseretnews.com Twitter: @kelsey_dallas