Cheers to hESCs@CHOC

It’s been many, many years since I’ve sipped a cocktail like the one above, but this was the celebratory drink ordered for us by I don’t know whom on the last night of the NIH hESC training course. The tray of drinks reminded me of a plate of cell cultures so I snapped a photo. It was a fun evening and by the time it arrived, the scientists were generally at ease with this “religious woman.” I really liked them, as was the case last time I attended.

Two interesting conversations stuck with me from the final evening. First, a Brazilian woman asked me if I’m able to separate my personal beliefs about hESC research from my reporting. It’s a fair question, but one nobody asked of Gary Robbins … and he wasn’t shy about sharing his beliefs, religious or otherwise.

Every day of the week, journalists must set aside their personal convictions and report the news. Non-journalists sometimes think this doesn’t happen; they see bias everywhere. In fact, my first introduction to the notion of postmodernism came not from any discussion of pop-philosophy, but from the Walter Lippman classic Public Opinion. In it, one of the founding editors of The New Republic argued that we all see life through the limiting lens of culture and language. The best we can strive for is fairness. Read Lippman’s Wikipedia bio; it provides a compelling look at the interplay of democracy, philosophy and the news.

Gary reports differently about hESC research than I would, but not only because we have different beliefs about the ethics of this work. He is under daily news deadline pressure and I’m an occasional, long form writer with a bent for investigation. I look for what’s not being said or reported. In this case, what’s not being reported with any regularity or conviction in major news outlets is that hESCs are not likely to be the great therapeutic hope they have been pumped up to be.

This is not my opinion, but the somewhat reluctant opinion elicited from 10 prominent scientists who were asked some challenging questions at yesterday’s concluding symposium. The first question was: What are the long-term cancer risks of hESC therapies? Jeanne Loring, whose extensive credentials include work on the Human Genome Project and collaboration on the WARF patent challenge, did not let any of her peers off the hook as moderator of the Q&A. One by one the Oxford guy, the Stem Cell Inc. guy, the Stanford guy et. al. admitted that they have no idea and no answer for this concern.

That’s big news in and of itself, but not for this venue. …

The other significant conversation I had on our final evening together was with the scientist who asked me about The Secret. She did foundational work in the hESC field … as a born-again Christian. The work kept her out of church for ten years, until one day she was looking at hESCs differentiating into various cell types under her microscope. They reminded her of the human race in all its diverse beauty. She imagined God looking down upon humanity through his lens and desiring us to sing hymns and praise songs to him in unison (hESCs have a biological imperative to congregate). She decided it was time to go back to church.

This gracious Christian who was admired by everyone shared her story freely. However … however. She is still not entirely comfortable with her hESC work … and she won’t be telling her story on the record any time soon.

There is much, much more that can be said about the past ten days, but I came away from them with three strong convictions:

  1. Nearly as important as the ethics of hESC research is the lack of regulation in the IVF industry. The United States is far behind many European nations in its concern for 1) the well-being of women receiving IVF therapies, 2) children born of egg/sperm donation and multiple births, and 3) both the exploitation of egg donors and the fate of their eggs.
  2. The best hope for therapeutic uses of stem cells lies in iPSCs that originate in one’s own body. Not only do potential hESC therapies pose significant risks, but adult stem cell therapies from donor sources do as well. Arlene Chiu asked the representative from Stem Cell Inc. if the stem cells in their inaugural FDA-approved human trial had been tested for diseases like neurofibromatosis (NF). Chiu had heard a talk by an NF1 researcher who found that neural stem cells transplanted into a mouse brain resulted in a proliferation of NF tumors in the brain. The Stem Cell Inc. representative said that some screening had taken place, but it was not comprehensive. Chiu was incredulous.
  3. The hype over hESCs has done considerable harm. During the panel discussion, the eminent panelists were confronted by an Autism advocate who wanted to know what can be done about desperate parents taking their sick children outside the United States for non-FDA approved stem cell treatments. One MD commiserated with the woman’s experience, saying it mirrored his own; another panelist noted that a scientist who had investigated charges against a Chinese clinic had been subjected to an “investigative review” of his own by the scientist whose advertised results he found spurious. No suggestions were offered … nor was any responsibility taken for pumping hESC research up and selling it as THE great hope for all manner of human suffering.

UPDATE 3/19: Clarification on this post.

Winding Down

I’m on day 10 or so of conference lectures. Today it’s Stem Cell Culture Secrets and Patent Issues (which combine into quite the quagmire in the hESC field). Yesterday I only attended one talk, that of Gary Robbins, the Science Dude at the Orange County Register. Gary’s blog about local science news gets a lot of traffic. I picked up some good tips.

This week he is running two polls. One is about whether or not it will demean a trained elephant to temporarily encapsulate it in a giant bubble as part of a stunt at the Discovery Science Center (371 respondents said no; 353 said yes as of 6:42 am this morning). The other is called “Is Science Sinful?” It asks about a senior Catholic cleric’s declaration that certain types of scientific research (including genetic manipulation of human embryos) are sinful. This poll only got 68 responses: 43 disagreed with the cleric, 7 agreed and 18 said the question was too vague.

If these polls are to be taken seriously—and I’m not sure they are—more Orange County Register readers care about the temporary fate of a trained elephant than care about a prominent theologian’s opinion about what it means to be human.

Gary and I have emailed back and forth a couple times in regard to his coverage of local hESC news. It was good to meet him in person. He’s appropriately kinetic, and gave a current events talk about the impact of the Internet on the news business. He also handed each of us a dime to demonstrate how hESC scientists ought to talk to the press about their work. He said that when he talks to people about hESCs, he uses a dime to demonstrate that the 8-celled blastocysts destroyed in the research are the size of President Roosevelt’s eye on the coin. His was a lecture about educating a busy public about science rather than one about how hESC scientists can avoid being misquoted or manipulated by unscrupulous or untrained reporters.

After the lecture, I attended a party at the hotel where the students are staying. We sat together in a dark room on the 18th floor and watched the fireworks over Disney Land. I was asked my opinion of The Secret and will be researching that today for a lovely, accomplished scientist from another part of the world. She doesn’t want to buy into The Secret’s message if it is inconsistent with Christian faith.

I also heard last night that Hans Keirstead is being shadowed by an HBO film crew and that he’s toned down his rhetoric, which, if true, is good for everybody.

Tomorrow, the NIH course wraps with an all-day symposium on stem cell treatment for pediatric diseases. Then I’m off to Santa Cruz to meet a faithful blogging friend in person. While I’m there, I’m going to worship at Vintage Faith Church where my new friend Dan Kimball pastors. After that, I’ll be spoiling my family for a bit and getting down to some serious writing work.

Update: I was thinking more about Gary’s polls. There are other possibilities for the divergent interest. First, Gary said his readers respond more to local science news than national or international news. Second, perhaps readers rightly discern that the temporary fate of a trained elephant is trivial enough for a 2-second opinion poll, whereas contemplating what it means to be human requires a bit more thought.

Update 2 (3/15/08): The Bubble/Elephant stunt at the Discovery Science Center has been canceled after an outpouring of public protest.

Monday Notes on hESCs@CHOC

 

 

Michael Kalichman, director of the Research Ethics Program at UC San Diego, spoke this morning about hESC ethics. His was a probing Q&A format as he tried to get the scientists to think through the pertinent issues. They didn’t say much, but I believe his questions got them thinking. The discussion wasn’t really an “Is hESC research right or wrong?” discussion, but one about reasoning out inconsistencies in logic. It was a fair discussion, except that he said the opposition equates leftover IVF embryos with live children. I’m not sure that’s accurate. Of more concern to me than the fate of a finite number of leftover IVF embryos is who we become as a society if we don’t do the hard work of thoroughly hashing out the ethics. This is where religious voices are vital to the discussion. Unlike Sidney Golub who said he doesn’t like slippery slope arguments, Kalichman gave weight to concerns about where hESC research might lead. I think it is fair to say that proponents invoke their own brand of slippery slopism when they resist all constraints, regulations and/or oversight.

I won’t say much more about Kalichman’s lecture here, except that the ethics discussion once again appears to have progressed in both tone and content. Early in the talk, he warned that what happened in Korea could happen here and he advised the budding hESC researchers to abide by whatever rules govern their work.

Three important points:

  1. In light of advances with iPSCs (induced pluripotent [adult] stem cells), he thinks it is not unreasonable for ethics committees to require that research proposals include a defense of the use of hESCs over iPSCs.
  2. It is too early to conclude that hESCs and iPSCs will be therapeutically interchangable; therefore all types of stem cell research should proceed.
  3. As a proponent of hESC research, he advised students to treat human embryos with respect because they are more than ordinary cells.

A discussion comparing the ethical constraints on hESC researchers to those on journalists ensued. It was kind of funny, as I realized that journalists may be less popular than hESC researchers. Many hESC researchers are interested in curing disease after all … as are many journalists, only our work is focused on curing (or, at least exposing for treatment) societal ills rather than physical ones.

Kalichman mentioned something about journalists not identifying themselves appropriately. This got me thinking more about blogging conferences. I don’t believe it is my responsibility to tell each lecturer at a public or semi-public event that I will be blogging their session from a particular point of view. They should assume that a lecture (especially one sponsored by the National Institutes of Health) delivered to an undefined audience is fair game to be reported on. As a courtesy, a conference host might wish to alert speakers to the presence of media, but I don’t believe it is required of them either. Additionally, in this situation, I introduced myself to the students as a journalist on day one. I have not named any of them, and will not in this or any other venue without their permission. If I request any formal interviews, only then will I discuss with sources the parameters and possible consequences of an interview.

Two side notes:

  1. This morning, I also attended a lecture on Aneuploidies (chromosomal abnormalities) in hESC culture. The significant development from 3 years ago is that there appear to be two types of aneuploidy: one potentially carcinogenic and one that may be a normal and harmless feature of stem cell culture.
  2. Speaking of new developments, I heard on Friday that Hans Keirstead’s technique for culturing highly undifferentiated oligodendrocytes has been replicated. I’ll have to check into it.
[photo hESC cultures, ©cas 2008, Orange, CA]

Friday Fun with Religion, Science and the Press

Friday, March 7, 2008

ACT I:

12:00 pm, directly after a Psychiatry & Spirituality Forum lecture to psychiatric residents at UC Irvine

(Paraphrasing)

Senior Staff Doctor: “Hello”

Christine: “Hi, I’m Christine. I’m a journalist. I’m doing a story on the Forum for xyz news outlet.

Senior Staff Doctor: “Every time I talk to a reporter, I come out sounding like an idiot. …”

Christine: “Sometimes it’s not the reporter’s fault. It’s those word counts. You have to talk in sound bites.”

Dr. Kheriaty agrees, kibitzing follows.

Senior Staff Doctor to Dr. Kheriaty: “That reporter from wxt news outlet called. She wanted to know if you are some kind of religious zealot. I told her you aren’t, but you know, you ought to have my Native American friend speak. He really helped us get through a contentious work situation.”

Dr. Kheriaty: “We try to be imperically-based and inclusive …”

ACT II:

5:45 pm, CHOC Boardroom, before NIH Embryonic Stem Cell Training Course students arrive for lecture and dinner

(paraphrasing)

Renowned Stem Cell Researcher: “Hello”

Christine: “Hello”

Renowned Stem Cell Researcher: “Are you a student?”

Christine: “No, I’m a journalist.”
Renowned Stem Cell Researcher: “A journalist? From what publication?”

Christine: “I’m pitching a story to xyz news outlet. It’s non-sectarian.”

Renowned Stem Cell Researcher: “It’s not Catholic is it?”
Christine: “No, but I’ve written from that perspective before. I’m not doing that this time. People should be able to disagree and still be respectful though, don’t you think?”

Renowned Stem Cell Researcher: “I don’t know. I’m glad I asked.”

Christine: “Why, will you say something different in your lecture because I’m here?”

Renowned Stem Cell Researcher (direct quote): “No, but the Catholics. I’ll be honest. I despise them.”

Christine: stunned silence

Renowned Stem Cell Researcher (paraphrasing): “The bishop of tzv came down to mwl saying he’s against IVF, ruining a lot of people’s happiness.”

Christine (to herself): “Nice to meet you too.”

[photo ©cas 2008, CHOC North Boardroom, Orange, CA ]

hESCs@CHOC 2

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:

  1. The Korean somatic cell nuclear transfer (cloning) scandal seems to have softened some of the gung-ho cowboy bravado.
  2. The proven feasibility of creating induced pluripotent stem cells (iPSCs) from adult stem cells.
  3. The embarrassing nature of a particular hESC scientist’s rhetoric.
  4. The strength of opponents’ argument that it is simply wrong to kill and experiment on destroy 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.

hESCs@CHOC

I’ve gone straight from engaging with pastors to engaging with post-doctoral scientists. What, you ask, do I mean? Well, for the next 10 days, I’ll be at Childrens Hospital of Orange County (CHOC) attending the 5th annual NIH Human Embryonic Stem Cell (hESC) Training Course. I attended three years ago and already noted a significant development. Two of the dozen scientists in attendance are here to learn how to culture hESCs so that they can reprogram adult stem cells into the more versatile pluripotent ones, not because they want to be hESC researchers.

Phil Schwartz was prescient when he stood by his convictions to work with the NIH approved cell lines in the belief that alternatives to destroying new embryos would emerge. He named at least three alternatives this morning: stem cells derived from adult cells, from eggs and from sperm. Of course, I’m not yet sure how interested the students are in all that. Phil will make sure they get a well-rounded introduction to the field. For this tax-payers can be grateful.

I won’t be blogging much from this material, as I’m working on stories for other outlets, but I will try to reserve something for Exploring Intersections. A few of the lecture topics I’m particularly interested in are as follows:
  • IVF
  • Anuploidies
  • Ethics
  • Talking to the Media
  • Stem Cell Patents
  • hESC Culture Secrets
  • Stem Cell Transplantation

Three years ago I met one of my closest California friends through this course. That friend is now a NIH-funded hESC researcher. This morning, when I told a student that I had just come from a pastors conference, she remarked that the two groups were polar opposites. And isn’t that part of our problem? Not only is there a misconception that science and religion must be at odds, but there is also a prevailing wind of public discourse that always frames the “other” as an enemy. I hope to do my little bit to change the direction of the wind. We’ll see. First I’ll have to get past 30 minutes of Sidney Golub talking hESC politics from what I expect to be a calcified point of view.

Chronic pain harms the brain, but what about the spirit?

A new study published in the journal Neuroscience finds that “chronic pain can disrupt brain function and cause problems such as disturbed sleep, depression, anxiety and difficulty making simple decisions.”

HealthDay News reports:

“Researchers at Northwestern University‘s Feinberg School of Medicine in Chicago used functional MRI to scan brain activity in people with chronic low back pain while they tracked a moving bar on a computer screen. They did the same thing with a control group of people with no pain.

In those with no pain, the brain regions displayed a state of equilibrium. When one region was active, the other regions calmed down. But in people with chronic pain, the front region of the cortex mostly associated with emotion ‘never shuts up,’ study author Dante Chialvo, an associate research professor of physiology, said in a prepared statement.

This region remains highly active, which wears out neurons and alters their connections to each other. This constant firing of neurons could cause permanent damage.”

Here are some resources that suggest better days are possible:

American Chronic Pain Association

The National Foundation for the Treatment of Pain

The Mayday Pain Project

American Pain Foundation

PTSD/PTG: Two Sides of a Coin

Last week, in my Religious Considerations and Democratic Pluralism post, I failed to note a scholar who spoke at the Politics, Pyschology and Ethics seminar that I mentioned at the end of the post. Her name is Cheryl Koopman and she is a professor of psychiatric research at Standford University. Koopman talked about her research into Post Traumatic Stress Disorder (PTSD). Here are some basic facts that I gleaned:

Koopman’s research findings were centered around the 9/11/2001 terrorist attacks, after which the incidence of PTSD increased dramatically in the United States, particularly in the New York metropolitan area.

PTSD is not just a disorder experienced by war veterans. It is now acknowledged that cancer victims and other trauma survivors can experience PTSD symptoms. Koopman said the nature of traumatic memory is for it to become disorganized. Often either too much or too little is recalled. It differs from narrative memory in that the past becomes indistinguishable from the present. Traumatic memory is not rational and categorical, but sensual. It consists of bodily memories. It is dissociative.

For example, watching footage of witnesses to the terrorist attacks, one can clearly see that they are in shock. PTSD victims get stuck in the shock. It is made worse by continually reliving the horror. Those who watched a lot of news coverage after 9/11 suffered more than those who didn’t. Here was the problem for our community in late 2001. TV or no TV, there was no escaping the reality for a good long time.

Three elements need to be present for someone to be diagnosed with PTSD:

  1. persistent intrusive symptoms
  2. persistent avoidance of reminders
  3. persistent increased arousal

Sleep problems are common and avoidance doesn’t work in the long run. Another finding is that earlier traumas can act as a vaccine against PTSD unless the previous traumas were also severe. For instance, both a rape victim who has been previously assaulted and one who has led a sheltered life will fare worse than a rape victim who has lived through a moderate trauma.

The bad news is that PTSD not only impacts mental and emotional health, it damages physical health. The good news is that, unlike some mental health problems, people recover from PTSD. Koopman suggested these avenues of healing:

  1. Social networks—being with people.
  2. Talking and/or writing about the trauma
  3. Symptom management: meditation, meaningful faith rituals, controlling thoughts volitionally, imagery/hypnosis

More good news is that in addition to PTSD, researchers have observed Post Traumatic Growth. Koopman noted that after 9/11, altruism increased markedly. NY Times columnist David Brooks has talked and written about this in regard to the presidential campaign. He sees 9/11 as the catalyst for our collective longing for unity and self-sacrifice.

PTSD and PTG can exist together. A person can really wish the trauma had not occured and yet be grateful for its lessons.