Day 2 of the NIH hESC Training Course was fascinating. This year, I’m not hanging with the scientists 10 hours-a-day, but am only attending lectures that might address advances or new challenges in the field. Once again, I’m struck by the chastened tone, not only of the students, but of the speakers. Phil Schwartz set the tone on day one when he showed a series of slides spanning the gestation of a human fetus from embryo to birth.
In the morning, Dr. Thom Nass from Coastal Fertility Medical Center spoke about invitro fertilization (IVF). The reason for Dr. Nass’ talk is that hESC lines are generated from leftover IVF embryos. Some things I learned or relearned about IVF:
The United States is the “Wild West” when it comes to IVF regulation, and even some professionals aren’t happy with this reality. Dr. Nass, who used the phrase Wild West to describe the situation, would prefer more regulation so that he and his colleagues are not left entirely on their own in advising patients about these complex issues. In contrast, a cell biologist from Estonia would prefer less regulation in his country. Potential egg donors there must be approved by multiple committees before they give up their eggs.
- This is probably not a bad thing, as the potential for exploitation is integral to this transaction. Nass said egg donors are paid $5000-$6000 per cycle, which includes 5-6 weeks of chemical manipulation of their pituitary function. I can’t recall the colorful analogy he made to the extreme version of PMS that women experience with treatment, but the point is that chemically manipulated hormones are no picnic for patients or their families. Some women’s eggs are worth more than others. In Irvine, CA, where Nass practices, there is a large Asian population and he says Asians are much less likely to donate their eggs than other ethnic groups. Thus, Asian women can earn up to $50,000 selling their eggs. A UCLA MD/PhD confirmed this statement.
- Preimplantation Genetic Diagnosis (PGD) is now standard for sifting out defective embryos. The procedure involves puncturing the embryo and removing a single cell for screening. Nass says concerns about damage to the fetus from this procedure have been found to be without merit. hESC lines theoretically can be generated from this single cell once genetic testing is completed (thus creating yet another non-embryo destroying source of hESCs). I’m unsure if scientists have already done this.
- Coastal Fertility Medical Center does not do PGD for sex selection, but sex selection is legal in the United States and other labs are willing to do it.
- Until last year HIV patients could not legally have IVF embryos implanted in California. Nass says disease transfer is not a significant problem. He thought the Americans with Disabilities Act might have contributed to the change in law.
- Egg freezing techniques continue to improve, but freezing eggs is still a secondary option to embryo freezing at US IVF clinics. In Europe, where restrictions on creating embryos exist
are stricter, egg freezing is more common.
- The vast majority of IVF patients are not interested in donating extra embryos through adoption services like Snowflakes. Nass says this is because most couples don’t want a bunch of their genetic progeny running around out there in the world. I reminded him that this is exactly the reality for egg donors (and sperm donors, for that matter).
In the afternoon, I returned to CHOC to hear Dr. Sidney Golub talk about Stem Cell Policy and Politics. Last time, Dr. Golub’s talk sparked a debate between me and a number of others that ended with one of the instructors in tears, but advising me to continue engaging the issue. I determined to avoid a repeat yesterday. Golub made it easy to do with his more even-handed presentation. (I confirmed this impression with someone who had been present for the other talk.)
I surmise four possible reasons for the change:
- The Korean somatic cell nuclear transfer (cloning) scandal seems to have softened some of the gung-ho cowboy bravado.
- The proven feasibility of creating induced pluripotent stem cells (iPSCs) from adult stem cells.
- The embarrassing nature of a particular hESC scientist’s rhetoric.
- The strength of opponents’ argument that it is simply wrong to
kill and experiment ondestroy human embryos for experimentation. This one is not a guess. Golub conceded, with humilty, that this moral claim is a powerful one.
Dr. Golub did not look well, an observation I was not alone in making. I hope he takes care of himself, because he seems to have become a voice of reason in the debate. Here are some noteworthy points:
- He prefers peer review and regulation to legislation, even, I believe, in regard to California’s controversial Prop 71, which he says New York copied nearly verbatim. He outlined a historical precedent for this approach.
- England’s system of regulation is a good model; it separates science from political arguments.
- Various Scientific organizations have come to a consensus on several points:
- local oversight is preferable to national oversight
- provenance of cells and tissues (don’t recall what this refers to)
- altruistic donations of genetic materials (women can sell their eggs to make babies, but not for experimentation)
- no reproductive cloning or reproducing chimeras
- new cell lines will be necessary due to genetic instability
- a national advisory group should be established (this really hasn’t happened, according to Golub)
- Former chairman of the President’s Council on Bioethics, Leon Kass, was “controversial, extravagently bright, unafraid to make enemies.” In contrast, the current chairman, Edmund D. Pellegrino, is widely respected and a devout Catholic. Kass’ council appeared politicized in part because of the removal of two highly qualified hESC advocates, Dr. Elizabeth Blackburn and Dr. William May.
- According to Golub, patient groups are still the primary proponents of hESC research, though public support runs in the 60% range. The Juvenile Diabetes Research Foundation speaks with the “strongest voice.” Notably, the pharmaceutical lobby has been silent on the issue.
- Nearly everyone (80-90% of the population) is opposed to reproductive cloning. It is “dangerous and likely to fail.” Therapeutic cloning (SCNT) is another story. Golub supports it for research purposes, but thinks it is highly unlikely to be useful for therapies.
- Take home lessons: 1.) stem cell policy doesn’t easily accomodate compromise, 2.) legislation struggles to keep pace with science, 3.) US policy is a patchwork of limited federal programs and conflicting state policies + private enterprise, 4.) there is consensus on constitutional oversight, 4.) US science policy from 1945-2000 focused on priorities to be funded in contrast to the current interventionist approach.
During the Q&A, a San Diego cell biologist told the story of going to a Tijuana stem cell clinic with a reporter from the San Diego Union Tribune and described a heartbreaking scene of suffering families being sold a bill of goods in a glossy presentation.
Last evening at dinner, the scientist I mentioned in my previous post asked what “that religious woman” was doing at the course. My presence was once again defended by the host who invited me. In coming days I hope to convince her that I am a person, and not just “that religious woman.” I also hope being viewed as such doesn’t wear me out to the degree it did last time.