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Andrew Joseph, STAT
Andrew Joseph, STAT
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RANDALLSTOWN, Md. — Is the human genome sacred? Does editing it violate the idea that we’re made in God’s image or, perhaps worse, allow us to “play God”?
It’s hard to imagine weightier questions. And so to address them, Ting Wu is starting small.
Last month, the geneticist was here in a conference room outside Baltimore, its pale green walls lined with mirrors, asking pastors from area black churches to consider helping her.
Wu’s research focuses on the nitty-gritty of the genome; her lab at Harvard Medical School studies the positioning and behavior of chromosomes. But she’s also interested in improving the public’s understanding of genetics. She has gone to classrooms and briefed congressional aides. She has advised the team behind “Grey’s Anatomy.”
At a time of unprecedented access to genetic tests and plummeting costs for genetic sequencing, Wu believes people should know what scientific advances mean for them. The challenge is empowering communities that are skeptical of science because they have been underserved or even mistreated in the past.
Wu is making the case that one of the most visceral scientific debates of our time need not be relegated to academic journals and special summits.
“Is it possible, because you’re so organized and there’s so much trust between you and your congregations, that faith leaders can help us?” she asked the pastors here, who were joined by genetic counselors, community members, and other scientists.
Wu’s outreach to faith groups comes as advances in genetics are forcing scientists to grapple with the power of their newly discovered technology. The issue driving much of the ethical debate these days is genome-editing, which has become much simpler and more efficient with a tool called CRISPR.
Religious leaders and bioethicists have debated genome editing for decades, but it’s largely been a theoretical consideration. CRISPR makes once-theoretical notions — say, editing the genomes of embryos — a very real possibility. (Those changes are called “germline” edits and would be passed on to future generations.) It’s a revolution that’s being driven by scientists like Wu’s husband, famed geneticist and her Harvard Medical School colleague George Church.
“That is scary stuff, but this is what’s happening with the technology. It is moving forward,” said Tshaka Cunningham, a scientist at the Department of Veterans Affairs, who attended the session here and who said that people stand to take advantage of genetic advances. The black churches could help spread that awareness, he said.
As with scientists and secular bioethicists, religious communities have shown varying degrees of comfort with the notion of genome-editing.
Procedures aimed at curing disease are generally in line with certain religious tenets, even if those procedures require sophisticated technology; the Vatican said in 2002 that “germ line genetic engineering with a therapeutic goal in man would in itself be acceptable” if it could be done safely and without leading to the loss of embryos.
But genome-editing could, at least in theory, be used to do much more — not just to treat conditions but to “enhance” human beings, as bioethicists put it.
The problem is that the difference is in the eye of the beholder. Would editing a genome to protect people from HIV be considered a treatment? Should scientists eliminate Down syndrome or genetic causes of blindness? Those conditions are viewed by some as disabilities but by others as traits that should in their own ways be respected and embraced.
A Pew Research Center survey this summer found that people who are more devout are less likely to be willing to edit their own child’s DNA to protect their health and more likely to view genome-editing as meddling with nature.
“The boundary between treatment and enhancement is very, very fuzzy,” said Nicanor Austriaco, a theologian and biologist at Providence College in Rhode Island. He said he was not confident that such a difference could be made clear.
As someone who doesn’t practice a religion, Wu at first didn’t know what issues might come up as she tried to talk genetics with faith communities. So one day, she pulled up a map of churches in the Boston area and started cold-calling them.
A dozen calls ended in voicemails, but she eventually reached pastors at Christ the King, a Presbyterian church with congregations around the area. They invited her to come talk with some of their congregations about the intersection of genetic technology and faith.
“I can’t say we reached agreement,” Wu recalled in an interview in her Boston office, “but I think everyone really enjoyed having things on the table.”
Eventually, Wu met with a few reverends, and arranged for some clergy members to talk with executives at genomics companies.
Her goal, Wu said, was not to promote genetics. Wu is the cofounder and director of a group called the Personal Genetics Education Project, which aims to engage the public about genetics and avoids advocacy. She saw it as an opportunity to understand any tensions that might exist, as well as to answer and ask questions.
The pastors and congregation members asked whether genome-editing infringed on the belief that God made people in his image and whether by controlling genes, people were assuming a power that only God should have. Wu didn’t have easy answers, and neither did they: Even within congregations, opinions were hardly uniform.
The human genome naturally picks up mutations and genes are turned “on” or “off” by a number of factors, so it’s not as if the genome is fixed. But even some leading scientists have expressed the belief that there’s something sacred about the human genome. They say it deserves reverence as scientists continue to find ways to manipulate it or, even more radically, consider ways of recreating it synthetically.
“I do believe that humans are in a special way individuals and a species with a special relationship to God,” National Institutes of Health Director Dr. Francis Collins told BuzzFeed in July. “And that requires a great deal of humility about whether we are possessed of enough love and intelligence and wisdom to start manipulating our own species.” (Collins has said he would possibly be open to germline editing if it was limited to eliminating disease, but for now, the NIH does not fund research that involves editing embryos’ DNA).
Not everyone shares those concerns. Ronald Cole-Turner, a theologian and ethicist at Pittsburgh Theological Seminary, dismissed the “playing God” argument as one used by people who do not understand theology but are wary of germline editing.
“Christian theologians just don’t sit around and think that way,” Cole-Turner said. “I just don’t think it’s a legitimate argument that Christian theology shares this worry about ‘playing God.’”
Cole-Turner also said the idea that the human genome retains a sacredness apart from the rest of God’s creations didn’t square with him. In his view, it’s not “like God had put up a huge ‘No trespassing’ sign right on the edge of the chromosome.”
“The entire creation is a gracious gift in which human beings are called on to exercise a certain level of responsibility,” he said. “But there’s not a privileged zone.”
At the event in Maryland, the attendees addressed the history of prejudice against and exploitation of African-Americans in medicine and the distrust between people of faith and scientists. They also broached how non-black scientists and pastors could try to engage with the black community without being paternalistic and whether underserved communities would even have access to whatever genetic therapies are developed. The event was organized by the Minority Coalition for Precision Medicine and the Health Ministries Network, groups that bring together scientists and faith leaders.
Earl Woodard, the senior pastor at New David Baptist Church of Christ in Baltimore, said his church’s members feared that some people would use whatever scientists gleaned from genetic information to try to justify ideas of racial inequality.
“When they hear the word genetics, genetics sounds like experimentation to determine inferiority,” he said. “The church has got to be able to build a bridge of trust between the medical community and the people in the pews.”
To Wu, that was precisely why people needed to understand more about genetic technology — and she hoped that awareness could stave off any attempts to use it maliciously. It’s an idealistic goal, but Wu was driven by the dark history of medicine, including the eugenics movement of the early 20th century and the Tuskegee syphilis experiment.
“Why do we leave people out?” Wu told the group. “And what can we do about the anger and the pain that comes from that?
The Personal Genetics Education Project has held five congressional briefings about different aspects of personal genetics, and Wu would like to organize the next one around the issues of faith and genetics. But she’s also worried that the research community can be too quick to accuse people with religious views of impeding scientific progress.
“Human beings, one of the things they do is judge,” she said in the interview. “It’s part of how we hurt each other and it’s part of how we get better. And I think it’s the being judged and judging based on your traits that makes genetics, which is responsible to a certain extent for your traits, such a touchy piece and such an important piece.”
“Everyone should be aware of those conversations,” she added, “and be a part of them.”
This article is reproduced with permission from STAT. It was first published on Oct. 13, 2016. Find the original story here.
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