Faith in Our Genesby Tamara Fynaardt
Christians are an important voice in discussions of genetic technologies both hailed as medical salvation and condemned as “playing God”
As her toddler fingered the ears of a stuffed bunny, Linda* described a daily routine of clapping her daughter’s chest, coaxing her to cough, and administering antibiotics to keep her breathing easy. She talked about Morgan’s* future, which will include continuous treatments and occasional hospitalizations. Her daughter may eventually require the help of a ventilator—maybe even a double lung transplant. Still, with diligent disease management, Morgan, who was born with cystic fibrosis (CF), could live into her 40s.
While Linda talked, Dr. John Swart ’90 listened. A biochemist, he’d decided to leave the office for the afternoon to spend time with a family living with CF. He thought about his own three kids as Linda shared the shock of finding out, after two healthy babies, that she and her husband were CF carriers who’d each unknowingly contributed a mutant copy of their CF gene to their last-born.
*Names have been changed for confidentiality.
Dr. Sara Sybesma Tolsma has served on the RCA’s Commission on Social Action and co-authored papers on genetic technologies with other Christian scientists, ethicists and theologians. A new project is taking her into a curious classroom: the church. She’s currently working on a Bible study on the science and ethics of biotechnologies like genetically modified organisms, genetic testing and screening, gene therapy, embryonic stem cells, and human therapeutic cloning that could be used to grow replacement cells and organs.
Last fall she piloted six 60-minute lessons in an adult discipleship class at her church, teaching participants—mostly non-scientists ranging in age from teens to retirees—scientific terms and helping them understand concepts like delivery vectors for gene therapy and the process of somatic cell nuclear transfer.
The genetics lessons were followed by discussions of ethical and theological questions like: What is a soul, and when does it arrive? Does it arrive fully developed, or does a soul grow into “being,” the same way egg and sperm become first a zygote, then a morula, blastocyst and eventually a fetus? And is human life at each of those stages the same thing as being a person?
After understanding more clearly that conception is less a moment than a process, one participant commented, “I thought I knew the answer to ‘When does life begin?’ But now I think a better question is ‘When does a person begin?’”
It’s a better question, but harder to answer.
As they learned more about the science, participants had better-informed debates about the ethical issues and implications for individual Christians as well as the wider body of Christ. Recognizing that devout Christians can come to different conclusions, they explored ways to minister to parents who are considering IVF to have a child or families hopeful that stem cell research might lead to a cure for generations of Huntington’s disease.
Class members talked about “playing God” with creation—genetically modifying plants and animals to feed the hungry. Yet GMOs (genetically modified organisms) decrease species diversity, which can devastate ecosystems and lead to extinction. Scientific progress can relieve suffering and extend life. In most cases, though, such medical advances are available only to those who can access and pay for them. Is it ethical to expend resources trying to grow replacement kidneys when a large percentage of the world’s population doesn’t have clean water?
At the end of six weeks, Tolsma’s students felt more scientifically knowledgeable—and more compassionate toward people whose lives are affected by physical brokenness and the hope that science might save them. “It’s less mysterious now,” said a participant, “and more amazing than I realized.”
Above all, Tolsma reminds students, God is sovereign and may still perform miracles—some of them masquerading as marvels of science.
Swart is CEO of Exemplar Genetics in Sioux Center, Iowa, the only company in the world producing large animal models of human diseases like cystic fibrosis. Using biotechnologies like gene targeting, genetic modification and cloning, Exemplar farrows litters of identical-DNA piglets whose genes have been manipulated to produce a case of swine CF that is 94 percent similar to human CF. The pigs are then purchased by laboratories studying the disease.
Pig models are better than the more common mice models because mouse CF is only 77 percent similar to human CF, and mice don’t show the disease’s clinical signs, while pigs do. CF pigs enable scientists to study cystic fibrosis as it advances naturally—something one wouldn’t do with a human—and studying CF’s natural development produces data that researchers never had before, enabling more progress toward a cure in two years than had been achieved in the previous 20.
Swart, who has a doctorate in chemistry from the University of Nebraska, worked for NOBL Labs in Sioux Center, staying after it was acquired by Boehringer Ingelheim (BI), a German pharmaceutical company. He gained experience in operations, test development and regulatory affairs before BI closed the Sioux Center operation in 1997.
Not long after, Swart was contacted by former NWC board member Dr. Jan Schuiteman, a veterinarian and genetic technology entrepreneur whose northwest Iowa company, Trans Ova, is a global leader in cloning calves for dairy operations. Schuiteman knew a University of Iowa researcher had developed a pig model for cystic fibrosis. He encouraged Swart to license the patent, hire the scientist and launch Exemplar Genetics.
Although he’s been contacted by the Discovery Channel, Swart declined to be interviewed because he isn’t quite ready for a TV show about his transgenic pigs. While Exemplar’s pigs have led to advances in understanding the mechanisms that trigger CF and better treatment, that’s not the breakthrough he’s hoping for. When there’s a cure for Morgan, then maybe he’ll do a documentary for Discovery.
Swart believes his work is a response to “part two” of the greatest commandment in Matthew 22: Love your neighbor. While overseeing employees harvesting cells, altering their genes and cloning them, Swart thinks especially of his “neighbors” with cystic fibrosis, Huntington’s disease, muscular dystrophy, and genetic cancers or cardiovascular diseases—all of which Exemplar is trying to model in hogs so they can be studied and, Swart hopes, cured.
Through science, he sees ways to not only care for creation, but also to repair and improve it. “God gave Adam the garden and told him to work it,” Swart explains, adding that he disagrees with those naturalists who argue humans have had a mostly negative impact on creation. Without the kind of control science offers, Swart argues, we wouldn’t have the pest- and drought-resistant crops that enable us to feed the world, we couldn’t replace fossil fuels with cleaner renewable options, and we couldn’t develop better ways to treat disease.
“God has given humans the responsibility to make creation the best it can be,” he contends. “Science can enable nature to be more productive, and genetic technologies offer very powerful tools for correcting what happened as a result of the fall in the Garden of Eden.”
Compared to other areas of natural science, the field of genetics is young. It sprouted in the late 19th century with Gregor Mendel’s garden peas and then grew slowly until the late 1960s and early ’70s when the structure of DNA was solved and scientists discovered that genes are located on chromosomes. Genes were cloned in the ’80s, and in 1996, Dolly, the first cloned mammal, became the most famous sheep in history.
After Dolly, “our imaginations were loosed,” says Dr. Sara Sybesma Tolsma ’84, who studied cancer at Northwestern University before coming to teach biology at NWC. “Dolly was worldwide news, and soon fiction writers were churning out modern and all-too-realistic variations on Aldous Huxley’s Brave New World. Some speculated that miraculous cures were on the horizon, and others predicted the beginning of the end of human civilization as we knew it.”
In 2000, after a team led by Dr. Francis Collins finished mapping the human genome, scientists celebrated and theologians worried that less mystery about humans might lead to fewer reasons for faith in God. Excited to finally read humans’ 3-billion-letter-long “hereditary code of life,” researchers were eager to go further, faster. Religious scholars and ethicists wondered if someone should step on the brakes.
In an appendix to his book, The Language of God: A Scientist Presents Evidence for Belief, Collins, who converted from atheism to Christianity, welcomes theologians, philosophers, ethicists and other thinkers to discussions of scientific discoveries. But, he writes, “While some might argue that science is moving too quickly, and that we should declare a moratorium on certain applications until we have time to study them ethically, I find those arguments difficult to convey to parents who are desperate to help an ailing child.”
Tolsma assigns students to read Collins’ book, and in class she uses stories like Morgan’s to put a human face on the science of technologies like genetic screening and testing. In Morgan’s case, her CF may have been detected through genetic screening done on most newborns. Pre-pregnancy genetic tests might have alerted her parents to their one-in-four chance of having a child with CF. The same tests can help her siblings determine whether they are CF carriers, culpable for someday passing the mutant gene to another generation.
If one of Morgan’s CF-carrying siblings marries another CF carrier, they might use in vitro fertilization (IVF) to get pregnant, testing all the resulting embryos for CF and implanting only those with two normal copies of the CF gene. IVF is costly, though, so they might become pregnant naturally and then undergo prenatal genetic testing and use the results to prepare for caring for a special needs child if necessary—or they might decide to terminate the pregnancy.
Some of Tolsma’s students, as animal lovers, are already squeamish about the idea of cloning diseased animals for testing drugs and other treatments. More are uncomfortable at the notion of discarding diseased embryos. Nearly everyone squirms when abortion becomes part of the discussion. Yet Tolsma gently encourages them: Try to empathize—put yourself in the shoes of parents like Morgan’s who, because of advances in genetic science, might be faced with heartbreaking decisions.
Tolsma’s genetics classes are a pile of scientific terms and explanations leading to a slope, seemingly slippery at times, of ethical questions and conundrums. Using running “sentences” aimed at representing a DNA sequence—for example, thecatandtheratatetheredhat (actual DNA sequences have only four letters, but students get the point)—Tolsma shows how a single letter mutation—thecatandtheratatetheredbat—might lead to something as devastating as Tay-Sachs disease (TSD), an incurable genetic disease that causes mental and physical deterioration and will lead to an excruciating death before kindergarten.
To connect science with life, Tolsma might ask students to imagine they are newlyweds with Tay-Sachs in their family tree and then pose questions like: Would you undergo genetic testing to find out if you carry the TSD gene? If you do, is IVF—which can create 5 to 10 times the number of embryos than are needed for successful implantation—an ethical option for Christian parents? Who decides what should be done with the unused embryos, some diseased, some healthy? What if you are already pregnant with a child you discover will suffer and die from TSD?
“Some Christians, even those generally opposed to abortion, view a decision to terminate a pregnancy in which the child will be born with a painful and ultimately fatal disease as a form of relieving suffering,” Tolsma offers, referencing Collins who argues, “[I]n virtually every culture throughout history, the alleviation of suffering from medical illness has been considered a good thing, perhaps even an ethical mandate.”
For other Christians, Tolsma counters, the chance that genetic testing might lead to terminating a pregnancy raises ethical red flags. Abortion is a line they don’t intend to cross, so why take even a step that might lead in that direction? Still others, she adds, believe that even imperfections are gifts from God and that in avoiding suffering, important life and spiritual lessons might be missed.
Students are surprised when conclusions as varied as these are reached by peers in the same Christian college classroom. Eventually they ask, “What do you think, Dr. Tolsma?” But she’s unwilling—even unable—to give them a “right answer.”
“Biotechnology won’t save us,” she says, “and, as Christians, we shouldn’t embrace scientific advances just for the sake of the science or the advance. On the other hand, thoughtlessly rejecting genetic technology is not living out our calling to be thinking Christians.”
Might biotechnologies like genetic screening and testing lead to playing God, as some Christians worry? Maybe. But, Tolsma argues, blood transfusions, vaccines, antibiotics, and organ transplants were viewed skeptically as playing God at one time. Now few Christians would object to these life-altering medical advances.
Tolsma references the wisdom of Dr. Allen Verhey, a professor of Christian ethics at Duke Divinity School: “Verhey suggests that perhaps ‘playing God’ is a reflection of the image of God in humans. Maybe we ‘play God’ to imitate God and grow to be more like God in the same way children play house and in so doing, learn to be parents or spouses. Maybe ‘playing God’ is our human attempt to participate in caring for those in need as God does.”
Julie (Vermeer ’97) Elliott studied Christian ethics at Duke and now teaches ethics courses at Eastern University in Pennsylvania. “I don’t teach ethics the same way a lot of professors do,” she says. While many ethics texts and classes might ask students to consider dramatic situations like sinking boats and limited life jackets, Elliott prefers to focus on the ethics of real life and relationships. “Students want to know how they can think about their lives in relationship to their boyfriends, girlfriends, parents and siblings.”
Eventually the case studies Elliott discusses with her students involve the ethics of procreation. As the students consider marriage and family, sex and reproduction, Elliott shares insights from her own story, which includes single motherhood, secondary infertility and adoption.
Raising one daughter while an undergraduate, Elliott later married and then experienced infertility before adopting another. She and her husband briefly consulted with a fertility specialist, and it quickly became clear they were on a path toward IVF. As the prospect grew, so did the couple’s unease with traditional fertility treatment and the doctor’s consumerist “we’ll get you the baby you want” attitude.
They wondered whether having a biological child was worth the potential moral quandaries. What if Elliott became pregnant with more babies than she could safely carry? What would happen to any unused embryos? Was it right to generate life but not bring it to fruition?
Estimates put the number of unused embryos, frozen at fertility clinics, at more than 500,000. When Elliott shares that number with students, they’re shocked. Invariably they begin to wonder whether the use of those embryos to create embryonic stem cell lines might be a better option than indefinite cryo-storage. They also wonder about the ethics of creating those embryos in the first place. Yet without the advances of IVF, numerous couples wouldn’t have become parents through childbirth.
Experimentation with embryonic stem cells (ES cells) was given a green light in 1999, and progress since then has been two steps forward, one step back. Presidents have both banned research using ES cells and allowed it. Members of Congress have battled, trying to grant or deny rights through “personhood legislation.”
Unlike “personhood,” which is a concept, “embryo” is a specific scientific label—an umbrella term for the single-cell zygote, 16- to 32-cell morula, and 250-cell blastocyst, which, if implanted in a womb, will become a fetus and eventually a self-conscious adult with more than 10 trillion cells. Embryonic stem cell lines are created at the blastocyst stage by removing the inner cell mass (the eventual fetus) from the outer cells (the eventual placenta). Removing the inner cells destroys the embryo.
The cells that make up a human embryo are pluripotent, meaning they are phenomenally flexible. Implanted in a womb, they will continue dividing and differentiating until they grow into a human being. Outside a womb—like in a lab—embryonic stem cells can be chemically coaxed into nearly any human tissue: nerves, muscle, functioning pancreatic cells, beating heart cells. ES cells’ flexibility (the only thing they can’t become is a placenta) and capacity for self-renewal (they are “immortal”) are the qualities that distinguish them from other stem cells and make them so valuable to scientists.
Adult stem cells—or any that have developed beyond the embryonic stage—are also valuable and showing more promise than once believed, but they are still limited in what they can be used to study, and the vast majority will divide (renew) only a limited number of times before they die. And while some types of adult stem cells, like the hematopoietic cells found in bone marrow, are plentiful, others, like living brain cells, are harder to come by.
“The real excitement about medical benefits from stem cell research is the potential to use this approach to develop new therapies,” writes Collins, who now directs the National Institutes of Health. Diseases like type I diabetes and Parkinson’s arise because a certain cell type dies prematurely: insulin-secreting cells in the pancreas for diabetes and neurons in the substantia nigra of the brain for Parkinson’s. Even “[normal] aging is a failure of stem cells,” said Dr. Doris Taylor of the University of Minnesota’s Stem Cell Institute during a recent appearance on NPR.
Type 1 diabetes, Parkinson’s—even old age—might eventually be treatable through regenerative medicine, a dream for which stem cell research offers the most promise. Regenerative medicine therapies first need to be tested on the tissues they’re intended to treat, and testing on human tissues is a greater predictor of success than testing on animal tissues, even if they’re as closely related to human DNA as Exemplar’s pigs.
In addition, drug and other testing is easier and safer to do on brain cells grown from a donor embryo than on an actual brain (which, understandably, few people are willing to donate while they’re still using it).
Using leftover embryos from fertility clinics is the most common method for creating stem cell lines for research, but there are other ways to create ES cells. Somatic cell nuclear transfer (SCNT) involves removing the nucleus from an egg and fusing the “empty” egg with a “donor” cell, like a skin cell. This fusion cell is then treated so it develops into an embryo.
Embryos created by SCNT would never be implanted into a womb because the resulting fetus would be a clone of the skin cell donor, and human cloning is currently banned. However, stem cells from an embryo created by SCNT could be used to grow a replacement organ. And because the tissue of the replacement organ would be an exact match to the donor’s tissue, it wouldn’t be rejected.
In light of this potential, try telling someone currently facing an organ transplant that may either fail or be accompanied by years of taking immunosuppressant drugs that stem cell research should be off limits. “Opposing all research of this kind means the ethical mandate to alleviate suffering has been trumped absolutely by other perceived moral obligations [to an embryo],” argues Collins. “For some believers, that may be a defensible stance, but it should be arrived at only after a complete consideration of the facts.”
Reformed Church in America pastor Dr. Stephen Mathonnet-Vander Well, who studied theological ethics at Boston College and has served on the RCA’s Commission on Social Action with Tolsma, wrote about stem cell research in an October 2004 essay for Perspectives: A Journal of Reformed Thought.
While he admits to having deep reservations about the use of ES cells for many of the same passionate “protection of life” reasons a majority of Christians hold, he also shares how the words of a colleague with a debilitating genetic disease echo in his mind: “If Christians are going to oppose the use of embryonic stem cells that could change my life, they had better offer some good, clear reasons, not some vague theological mumbo-jumbo.”
Mathonnet-Vander Well adds, “To speak to those who suffer from terrible genetic disorders takes some hard-earned moral credibility. I wonder if Christians, as a group, have that kind of credibility. I would like to say to those anxious for stem cell research to ease their suffering, ‘We Christians are here for you. We will suffer alongside you.’ I am not sure, however, that I would be listened to. I’m not sure I should be.”
Faced with the inability to conceive a second time, Elliott found few faith-based resources to help her think through the potential collateral damage of IVF. So as a student and teacher of ethics, she did her own research and hopes eventually to write a book on reproductive ethics that will offer Christian couples guidance for thinking ethically about sex, love, the purpose of children, and the meaning of family.
Meanwhile, unused embryos already exist. Some are available for adoption by parents who want to birth a child, even if it’s not theirs biologically. Others remain frozen with no plan for them ever to develop into persons.
Some stem cell research proponents wonder whether the latter might have a different, but nonetheless valuable, potential. Summarizing their position, Tolsma says, “Perhaps the potential for a human life is only one of many potentials held by an embryo. [Perhaps] value and dignity are not solely associated with personhood but can be found in other potentials such as offering cures through the use of ES cells.”
Last October, officials at Geron Corp. of Menlo Park, Calif., announced they had treated the first human patient in the U.S.—a 21-year-old with a spinal cord injury—with embryonic stem cells. Timothy Atchison has told the Washington Post he believes his opportunity to pioneer embryonic stem cell therapy is part of God’s plan for his life. While it will be months yet before doctors know the outcome of Atchison’s stem cell infusion, they hope results will mimic those they’ve experienced with injured rats that, after being treated similarly, regained the ability to walk.
When considering the ethical treatment of unused embryos, the late Joseph Fletcher, an Episcopal priest and ethicist said, “In all cases, we need to ask, ‘What is the most loving thing to do?’”
This, of course, raises the question: What is the most loving thing to do? Frozen suspension? A kind of dignified death by being discarded? Continued existence as something life-giving but less than a person?
In his Perspectives essay, Mathonnet-Vander Well writes, “I don’t purport to know when [personhood] begins. [But] I am concerned that the use of ES cells is part of a process that leads … to a subtle devaluation and depersonalization of human [life].”
On the other hand, he says, “We need to acknowledge that those who are excited about the prospects for stem cell research are tapping into something that’s deeply Christian. If healing and concern for bodies isn’t rooted in Jesus’ ministry, what is?”
Christ did, after all, help the lame to walk again. 
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