Claire LeVine loves to watch her 7-year-old grandson, Bobby Stearns, play his heart out in Little League. She loves to watch him scamper across the green fields with his soccer teammates.
What she doesn’t love is watching him endure daily insulin shots or painful finger-stick blood tests every few hours.
Bobby has juvenile diabetes, a disease that devastates not only the children who have it, but the families that care for them. LeVine would love to see a cure for the disease, which is why the Walnut Creek resident serves as East Bay president of the Juvenile Diabetes Research Foundation.
And it’s also why she is an active proponent of stem-cell research.
Though still in relative infancy, stem-cell research holds great promise to cure juvenile diabetes and a host of other conditions, from spinal cord injury to Alzheimer’s disease to cancer.
“To cure something, you need to focus on it,” says LeVine. “As JDRF members we say, ‘Let’s accelerate this.'”
Most Californians agree with her, which is why Proposition 71 passed overwhelmingly in November 2004. The ballot measure established the S.F.-based California Institute of Regenerative Medicine at a total cost of $6 billion in bond debt.
The institute’s purpose is to serve as California’s clearinghouse for stem-cell science, establishing ethical protocols and holding the purse strings of all publicly funded research in the state.
Not everyone supports stem-cell research wholeheartedly. The Bush administration has limited federal funding and research because, like many in the anti-abortion movement, the president views the use of embryonic stem cells as tantamount to murder.
Others fear a burgeoning stem cell “industry” may give rise to a neo-eugenics movement in which vested interests in government and business cross ethical lines. Today we cure breast cancer. Tomorrow, do we “cure” homosexuality or freckles?
Moral questions like that are nothing new to Judaism, so it’s not surprising Jews stand at the forefront of stem-cell research and the ethical debates surrounding it.
Is there a Jewish position on stem-cell research?
Those who ponder Jewish medical ethics believe stem-cell research is wholly permissible under halachah, or Jewish law.
“There’s quite a bit of consensus,” says Dr. Lisa Lehmann, director of the Center for Bioethics at Brigham and Women’s Hospital in Boston. “We were put on this world to try and improve it. That’s a huge ethical mandate. Conquering disease is viewed within that light.”
Complications arise because of the methodologies required in stem-cell research. There are several ways to obtain stem cells, but scientists think the method that might best lead to cures requires embryonic stem cells culled from days-old embryos.
It’s also the method that sparks the most controversy. In the process of harvesting stem cells, those embryos end up being destroyed. To pro-life activists, that is unacceptable.
However, Lehmann believes the consensus Jewish view is markedly different when it comes to the moral status of an embryo.
“The phrase ‘mayim b’alma’ [mere water] appears in early rabbinic texts in reference to the embryo,” she says, “implying that it doesn’t have the same status as a human being. It doesn’t come close.”
Raymond Barglow, a Jewish resident of Berkeley, is also a strong proponent of stem-cell research. A few years ago, the retired psychologist co-founded an organization called Seniors Allied for Biomedical Research, in part because he resented the religious right’s opposition to the use of embryonic stem cells.
“I don’t like it when religious ideology controls government policy,” says Barglow. “That’s what was happening. It drove me nuts that the science was being distorted or ignored. There are 100 million people suffering from illnesses that stem-cell research has a chance of curing.”
No one yet knows just how good a chance, but the science involved makes sense.
Stem cells differ from other cells in that they are unspecialized, meaning they do not perform specialized functions, such as the way heart-muscle cells help blood flow. Yet under certain conditions they can be transformed into any human cell with a specialized function.
Need a new heart or a pancreas? Using stem cells, scientists might be able to grow you a new one.
“There are two sources of stem cells,” says Barglow. “One is from excess embryos in fertility clinics. There are hundreds of thousands of those in cold storage, and are usually thrown away. The other source is somatic cell nuclear transfer.”
That’s a more complicated procedure that seems like something out of science fiction. Barglow explains: “Let’s say a child has juvenile diabetes. We take a cell from that child’s cheek and remove the nucleus, which has the genetic blueprint for that child. Then we take a donated egg, remove the nucleus and replace it with the one from the child’s cell. Now it has the child’s blueprint. That will generate stem cells in five days. Those can be developed into pancreatic cells.”
Of course, there are some in the Jewish community not so excited about the brave new world opened up by stem-cell research.
“I see at as a slope that’s really slippery,” says Marcy Darnovsky, associate executive director of the Oakland-based Center for Genetics and Society. “We need serious and thoughtful discussion about the circumstances in which we use this technology.”
Darnovsky fears what she calls “the hydrogen bomb of reproduction technology,” wherein stem-cell research leads to a consumer market for designer genes. “It’s going to be expensive and it will exacerbate inequalities. Will we see the emergence of genetic castes, the ‘gen-rich’ and the ‘naturals’ who will be sweeping the floors?”
Darnovsky is quick to affirm that she and her organization support stem-cell research and have no ethical problems with harvesting discarded embryos for the purpose. It’s how society makes use of the science that worries her.
“Most people still think of scientists as serving the public good with halos around their heads,” she says. “But over the last 25 years, the situation has changed. The ties between science and commercial enterprises are much closer. Relationships that would have been scandalous a generation ago are not only commonplace, but now, if you’re not making money, people wonder what’s wrong with you.”
She fears the new Institute of Regenerative medicine will hold too much concentrated power. And despite the ban on cloning, Darnovsky fears new technologies will make the temptation to clone too great, possibly triggering genetic experiments not unlike those undertaken by Nazi scientists during the Holocaust.
“It’s close enough to the Jewish understanding of eugenics,” she adds. “For Jews this really should be raising some red flags, and make people stop and look more closely.”
Attorney Robert Klein, the driving force behind Prop. 71 and now the chairman of the CIRM’s governing board, believes ethical safeguards are in place. After the passage of the measure, Klein assembled a team of scientists, bio-ethicists and others to create new medical and ethical standards surrounding stem-cell research, standards he says are the most stringent in the nation.
“As the dominant player in the U.S., if California adopts the standards, other states would follow,” says Klein.
Lehmann, too, isn’t worried about abuses of the new technology. “Certainly any manipulation of the human genome has the potential to be used for good or bad,” she says. “That fact is not a reason to not pursue [research] given the potential positives. You have to constantly think about the potential.”
That potential helps fuel Claire LeVine’s activism. As far as she is concerned, the scientific community can’t work fast enough to save her grandson.
“There is a cure for diabetes,” she says. “You take beta cells out of pancreas from two cadavers and transfer them into someone with Type 1 diabetes. The cells migrate to pancreas. They implant and produce insulin.”
The problem is, for that treatment to succeed, large doses of immunosuppressant drugs are required, too much for children like Bobby to handle. “If we could create beta cells that match the body, then we could give everyone this,” adds LeVine. “Stem cells are important. We don’t have enough cadavers, so the best thing is to get your own body to do it.”
LeVine has high hopes for the S.F.-based CIRM and for Klein. “He is a very smart, very caring man, and knows how to get things done. His own son Jordan has diabetes.”
So far, the center has yet to disburse any funds to research labs. Court challenges to Prop. 71, filed by conservative anti-abortion and taxpayer groups, have hamstrung the center’s progress. Though an Alameda County Superior Court judge’s ruling last November undercut the opposition’s legal arguments, Klein is still steamed.
“The right wing is trying to break the back of the movement,” he says. “I thought they would sue to tie up grants, but I didn’t realize they would abuse the legal system as a tactic.”
Meanwhile, Klein is maneuvering around them. The institute has already selected recipients in the first round of funding. He recently raised $5 million in private donations toward a goal of $50 million in bridge loans.
However, even a proponent of stem-cell research like Lehmann remains somewhat skeptical of the CIRM and its mission. “If you look at the crucial medical issues facing the country,” she says, “where people don’t have access to good health care, from a social-justice perspective you have to wonder about putting out that kind of money.”
As far as LeVine is concerned, it’s worth every penny, especially if her grandson can one day be cured through stem-cell research.
“I feel optimistic,” she says. “For me, it’s ‘Let’s get this cure tomorrow.'”
Related Stories:
Bar Ilan prof hopes to crack little-known but deadly disease