With Respect and Conscience

CAMBRIDGE, Mass. — When he was 15 years old, Willy Lensch rode with his father in the back of an ambulance to the Salt Lake City Veterans Hospital in Utah. Critically ill with a rare form of blood cancer, Martin Lensch never returned home to the family farm in nearby Lehi.

Twenty years later, Lensch, a postdoctoral fellow at Whitehead Institute, speaks candidly about the impact of his father’s death. “Watching him wither away during the course of his illness left an indelible mark on my family. I still miss him.”

These early experiences shaped his professional choices, says Lensch, admitting that his decision to study blood disease was motivated in part by the loss of his father. As a graduate student at Oregon Health Sciences University, Lensch worked with leukemia patients and people suffering from Fanconi anemia, a devastating genetic disease that causes bone marrow failure. There was an unfortunate familiarity, he recalls, in his work with terminally ill patients and their families.

After completing his doctorate, Lensch joined the lab of George Daley, a former Whitehead Fellow who now is a visiting scientist at the Institute and an associate professor of biological chemistry and pediatrics at Harvard Medical School and Children’s Hospital. Lensch planned to use human embryonic stem (ES) cells to study blood cell formation, a decision that ultimately put the 36-year-old researcher into the precarious position of defending the field of human embryo research.

Most embryos used in stem cell research are created by in vitro fertilization (IVF) at fertility clinics. Couples undergoing treatment may decide to store, destroy or donate surplus embryos to science. The cells that Lensch studies are culled from donated embryos that are about a week old. These embryos contain a few dozen undifferentiated “master” cells that have the potential to form any cell type in the body. Researchers extract these cells and culture them in the lab, after which they can be used in experiments. As a therapy, researchers want to coax “uncommitted” stem cells into becoming specific cell types, such as nerve and cardiac muscle, which potentially could be used to repair damaged tissue.

Opponents of ES cell research argue that the destruction of human embryos, even just days following fertilization, is unconditionally wrong. Some, including the Catholic Church, compare it to murder.

Lensch, himself a Catholic, says he believes this research can be conducted respectfully and with conscience to benefit those suffering with disease. In today’s political climate, however, defending these complicated virtues carries considerable risk.

Taking these risks, Lensch says, is part of being a responsible scientist. In the past year, he has testified at a committee hearing on Boston’s Beacon Hill, presented his research to Utah’s House of Representatives Democratic caucus and braved a hometown audience of high school students, many of whom were appalled by his work. He has broached the subject with his family—some Mormon, some Catholic—and felt the sting of their rebuff. Lensch even faced the threat of losing his fellowship funding when an otherwise inconsequential phone call turned to the topic of embryonic stem cells.

“I’ve been compared to a Nazi doctor, accused of subjugating women and told that I am morally complicit in the murder of children,” says Lensch, who, despite being deeply troubled by these accusations, feels obligated to publicly discuss his research. “We don’t make discoveries, write them in our notebooks and then throw them in the fire. If you can’t give the salient points of what you’re doing and why you’re doing it, I think you’re missing the mark.”

The issues for Lensch are complex: His science is his livelihood. Should the political tides turn and embryonic stem cell research be outlawed, Lensch, a husband and father of two, could lose his research funding. “This whole thing could turn out badly,” he says, visibly frustrated. “Work could be banned, no new cell lines introduced, no professorship down the line—never mind the stigma of working in a blackballed field.”

In 2001, President Bush restricted federal funding for stem cell research to work using only certain approved stem cell lines. Rather than settle debate, the announcement stranded the research in a legislative no man’s land. At the time, the Bush administration claimed that there were more than 60 approved cell lines available. Two years later, only 12 are listed on the National Institutes of Health’s stem cell registry, six of which are controlled by foreign countries. Scientists claim that the additional lines are inaccessible, either held by private companies or unfit for research purposes. Without the introduction of new cell lines, Lensch and his colleagues argue, the science will stagnate.

“It’s very frustrating to imagine entering into research, investing time and energy into your work, and then not being able to do anything with it,” he laments. “We are interested in developing therapies, and if the legislative climate becomes darker, that won’t happen.”

Mounting frustration over these restrictions has prompted several scientific and research advocacy groups around the country to petition their state legislatures to challenge Bush’s decision. In May 2003, a Massachusetts legislative sub-committee convened to hear arguments about Senate Bill 515, which mirrors a similar measure passed in California last year and declares Massachusetts a safe haven for stem cell research. Supporters of the bill invited Lensch to testify at the hearing and share his perspective.

Dressed in his one and only suit—a simple green, tweed jacket with matching pants—Lensch arrived at the courthouse on the morning of the hearing freshly shaven, hair trimmed and far less experienced than many of the other witnesses. Nervous about his legislative debut, he shared the cab ride from Whitehead to Beacon Hill with laboratory leader George Daley, who also was scheduled to testify.

Inside the hearing chamber, a cavernous auditorium lined with stiff, theater-style chairs, the committee and a gallery of about 100 people heard more than five hours of testimony. First were the patients who shared stories about coping with disease and disability. Daley and a handful of other scientists testified next, recounting the difficulties they faced working under current restrictions. Then came the opponents, those who testified that stem cell research was an immoral project led by immoral people.

Lensch labored over his testimony in the days leading up to the hearing. When preparing, he didn’t know he would speak last, addressing a committee that already had heard a glut of contentious testimony: scientists both for and against ES cell research, members of the clergy, children with diabetes, a young paraplegic, a doctoral student who compared stem cell research to 20th century eugenics. When Lensch finally took the stand—a lone podium in front of the committee bench—he offered the committee an improvisational redress of testimony given by those other witnesses.

“I am testifying today because I sincerely believe that [embryonic stem cell] research holds great promise to substantially improve medical practice,” he told those gathered. “I am committed to remaining in the field despite its uncertain future…and I have put my credibility on the line.”

Although Senate Bill 515 is still in review and has not been enacted (even if it is, it won’t trump federal legislation), Lensch feels satisfied with the experience. “Scientists could be better at communicating what they do,” he notes. “To go to a public forum and talk about the rationale for what you do is your responsibility as a citizen.”

Lensch could easily blame circumstance for his foray into politics—the Bush announcement came just days after he agreed to join the Daley lab. But he doesn’t. “I have an incredibly overdeveloped sense of responsibility,” he says, smiling. “I don’t want to sit on the wayside and let other people be intimately involved in things that affect my life.”

Taking action has meant learning to speak publicly about his research to people who only faintly understand the scientific process. Lensch likens this to an experience he once had operating a wood-fire cook stove during a winter camping trip. The stove, which took hours to stoke, tested his companions’ patience.

“People naturally want to know what cures will come from stem cells, and when. If you say that you don’t know, there’s the perception that [the research] is probably not worthwhile,” he says. “I think that it’s difficult, even for me, to appreciate how slowly science moves.”

Helping people understand how science happens in the lab is not optional, particularly for publicly funded researchers, Lensch contends. “It’s too easy for people to think that it’s sterile, godless scientists working in the lab. It’s part of my responsibility to put a face on who’s in that laboratory.”

Ironically, it was a group of school children, not politicians, who first pushed Lensch to publicly account for his work with embryonic stem cells.

Last November, seven months before his Beacon Hill testimony, Lensch was invited by a childhood friend to speak at his hometown high school in Lehi, a mostly Mormon community in northwestern Utah. The friend, now a teacher at the school, was convinced that her students would benefit from hearing his story.

Lensch arrived to a packed auditorium. He discussed his academic journey and his experience studying disease. “But when I got to the part of the talk where I brought up stem cells, you could have heard a pin drop,” he recalls. The teacher who had invited Lensch knew only about his work studying leukemia and bone marrow transplantation. The stem cells were a surprise.

Lensch was moved by some of the students’ almost visceral reaction to his research. “After the talk, a group of very brave students came up and told me that I was wrong, and that what I was doing was immoral,” he remembers. “I tried to explain why I thought my research was moral, and I asked them to share their point of view. Although most of the students didn’t really know how to respond, I was incredibly proud that they came up to tell me I was a jerk. That took a lot of guts.”

The experience gave Lensch a better sense of what stem cell supporters like Sen. Orrin Hatch, R-Utah, are up against in persuading their constituencies to support ES cell research. Recently, facing sharp criticism in his home state, Hatch has wavered in his support. “As a Utah native, I wanted to tell Hatch that I supported the work he was doing and find out what I could do.” Lensch wrote Hatch and eventually met with the senator’s staff in Washington, D.C.

Eternally optimistic but not naïve, Lensch doesn’t expect to single handedly change legislative opinions about embryonic stem cell research. But, he adds, communication can change ideas.

“I remember watching Bush’s speech on stem cell research together with Willy,” says Lensch’s wife, Andrea Fiorillo. “There was an uncertainty, an insecurity, about what would happen in terms of his livelihood if this was the road that he went down.”

Fiorillo, who studied religion, is attuned to the ethical issues that characterize the stem cell debate and mindful of the deep personal feelings it evokes. She remembers reading about embryonic development when pregnant with their son, Dante. She and Lensch’s daughter from a previous marriage, Annie, followed a week-by-week calendar illustrating a fetus’s growth in utero. “I can’t say that I don’t think about the conflicts, because I do,” she admits. “But I believe that he is doing [the research] for ethical reasons. He’s a good person, and I support him.”

In discussing his work outside scientific circles, Lensch and Fiorillo tread lightly. When Lensch began studying ES cells, he was hesitant to discuss it, concerned about the judgments people might make. It wasn’t until recently that he finally felt comfortable sharing details about his work with his family, some of whom strongly disagree with his choices.

“Discussing my work has always been a tough bet,” says Lensch. “My current work is just another nuance of that, the difference being that with ES cells, I haven’t met anyone who doesn’t have an opinion.”

What will Lensch do if embryonic stem cell research is outlawed? If forced to choose, Lensch predicts that he will transition back into traditional leukemia research, although it’s clear that the move would not be easy.

“All I want to be able to say is that I did my best. That’s just an aspect of being a member of a community,” he says, slightly shrugging his shoulders. “I guess you can be an advocate wherever you’re at.”