Source: Deseret News

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.

Read more