April 2007
For the softest hair, use hamster extract
Tags: Bioethics, Ethics, Genetic Modification
Oliver has Hurler Syndrome, leaving him unable to break down deadly toxins in his body. Oliver also has hamster extract. The hamster extract appears to counteract some of the worst side effects of Hurler's Syndrome, and as an added bonus? Makes his hair softer, too.
Of course, the Daily Mail's take on the story brings to mind vast legions of hamsters being milked for their extract in some sort of dystopic hamster version of The Matrix. A quick trip to Google brings a slightly less science fiction, more science fact account of the treatment, which involves enzymes taken from genetically modified Chinese hamsters, given via slow IV drip once a week. The enzymes appear to mimic those Oliver is missing, cleaning up the toxins, helping him grow, and giving him much-needed energy.
Me, I'm just slightly disappointed there will be no hamster Neo.
(With thanks to birthday girl Laurie for the tip!)
-Kelly Hills
Bullheaded Bush Administration Puts Abstinence Ideology Before Lives:
Art Caplan on Blind Faith Sex-Ed
Is the Bush administration capable of allowing fact-based, scientifically proven evidence rather than ideology or blind faith to shape its public policies? When it comes to what to do about air pollution, endangered species, embryonic stem cell research, the disposal of farm waste, forest management or lead poisoning, the answer is apparently not.Nowhere is this administration's reliance on ideology and faith and willful ignorance of science more dangerous and harmful than when it comes to sex. The president and his people continue to be willing to let your kids get dangerous diseases and to tolerate tens of thousands of preventable abortions by ignoring the fact that abstinence-only education does not work.
In a just released major study ordered by Congress, independent researchers found that in four typical abstinence-only programs sampled from around the country there was absolutely no difference between the sexual activity of kids in these program and kids who were not. In one of the abstinence-only programs studied, the students met and got the 'no sex' message for an hour every day! All of the abstinence-only programs in the study had at least 50 hours of class time. The kids were in the programs for one to three years starting at about age 11.
Chastity-only sex ed had no impact whatsoever on the kids' sexual behavior. The abstinence-only kids admitted to having sex at the same rate and starting at the same age as other students not in these classes. Whether they were in an abstinence-only class or not, by the time they reached 17 years of age, half the kids said they had had sex and half had not.
Telling kids every day "don't have sex" - and nothing else - really does not work. American teenagers continue to get pregnant at a startling rate, leading to about 250,000 abortions every year - a higher abortion rate than in Canada, Sweden, the Netherlands or France, where sex ed consists of more than just "say no."
The rates of sexually transmitted disease among American kids continue to outpace those in other developed nations. There is plenty of scientific evidence from the United States and Europe that sex-ed programs that talk about contraception, condoms and abstinence do a better job at preventing unwanted pregnancies and controlling sexually transmitted diseases than abstinence-only programs.
This newly released research is just the latest in a long parade of studies that have failed to show any impact or efficacy of abstinence-only sex ed. So might we expect the Bush administration to look at the latest confirmatory data and admit that it is time to stop spending roughly $50 million a year of your tax money on abstinence-only programs that don't work? Nah.
Bush administration official Harry Wilson, the commissioner of the Family and Youth Services Bureau at the Administration for Children and Families, offered this response: "You can't expect one dose in middle school, or a small dose, to be protective all throughout the youth's high school career."
Actually, you cannot expect abstinence-only sex ed to be protective, effective or in any way useful at all. Ever. Period. Enough already. It's time to pull the plug on abstinence-only sex education. There are too many lives at stake to put up with a reproductive-health policy that is willing to kill and disable our kids out of an allegiance to a blind faith in something that does not work.
Deborah Spar on Paying for Eggs
Harvard’s Debora Spar has a commentary in a recent New England Journal of Medicine article that calls for an improved debate over egg donation and payment policies. Spar highlights a central inconsistency in American egg donation policy—we allow women to sell eggs for reproductive purposes, but not for research, even though the risks and benefits to donors are the same in both cases. Both donors undergo the same set of medical risks, and both receive roughly the same direct benefits—basically nothing. Yet in one case we allow women to sell their eggs for whatever the market will bear, with no informed consent requirements whatever, and in the other we prohibit any direct payment except for expenses, variously defined.Spar notes that much opposition to egg sales stems from fears of exploitation and “commodification”, but argues that these concerns apply equally to both reproductive and research donors. There’s already a thriving market in eggs, fueled by would be parents who are willing to pay whatever it takes, to the extent of mortaging houses and liquidating retirement accounts. Spar notes this market is getting steadily larger—her back of the envelope calculations indicate that roughly 13,000 IVF cycles with donated eggs were performed in 2003, almost all of which were paid for, at an average price of around $5,000. Paid egg donors get no substantial benefit from the procedure beyond the pay—the purchasing couple takes the eggs and there’s frequently no contact between donors and purchasers. Unlike organ donation, which comes with a mandated informed consent procedure, there are no such requirements for egg donation— brokers or fertility clinics can tell donors as much, or as little, as they feel like.
Why this transaction is less exploitive or commodifying than donating eggs for research really isn’t clear. There’s no compelling reason why blonde, leggy volleyball players who go to Harvard should be able to sell their eggs for $50,000 to wealthy infertile couples and women wishing to donate eggs for research can’t get paid anything. Other countries with egg donation policies frequently limit or prohibit payment for eggs, but treat both reproductive and research donors the same way.
Spar argues that current no-payment-for-research policies makes volunteers the only substantial source of oocytes for research. Anti-payment advocates have focused more on why women shouldn’t get paid and less on why they should—or will—volunteer to undergo a medical risk for free, or why anyone who can sell their eggs for reproductive purposes should be willing to donate them for research for nothing. Allowing payment for some donations but not for others seems almost certain to insure a shortage of eggs for research.
It should be noted Spar is not alone in these views. Judith Daar and Russell Korobkin of UCLA have argued here
The major obstacles to consistent treatment of egg donors are political rather than substantive. Proposals to ban payment for reproductive donors would produce howls of protest from those who profit from the assisted reproduction process, and proposals to pay research donors with public money would likely be considered dead on arrival. Spar’s proposals to understand and mitigate the risks of egg donation, insure that all consent to donation is informed, and have a serious debate on whether any women should be allowed to sell eggs are all sensible, but don’t look for any progress anytime soon.
Jim Fossett
AMBI/Rockefeller Institute of Government
Bioethics and Federalism Initiative
The States and Stem Cells:
It's All Over. States, not the Federal Government, Matter
We hate to say we told you so, but we did. Stateline.org’s Christine Vestal has a story here that details recent state actions to eliminate restrictions and provide financial support for embryonic stem cell research. Meanwhile, in Washington, both House and Senate have passed bills expanding the stem cell lines that federal funds can be used to support, but without margins sufficient to override a promised Presidential veto.
While details are still fuzzy, the most substantial state action was in New York. The recently enacted state budget appropriated $100 million for stem cell research, with an additional $500 million expected to come from somewhere, possibly the conversion of a not-for-profit health insurer to for-profit status. The budget creates an Empire State Stem Cell Board inside the state Department of Health that has a funding committee, charged with managing the project review, award, and oversight processes, and an ethics committee, charged with enacting appropriate ethical standards for research. Both committees are appointed by the governor, with some number of members to be nominated by state legislative leaders. Funding is significantly less than initially proposed by Governor Eliot Spitzer--$600 million rather than $2.1 billion-- but the board’s charge seems clearly focused on stem cell research rather than the broader, economic development oriented, language in the governor’s original proposal. Additional appropriations can certainly be made to the board in later years, but a large bond issue initially proposed by the Governor was not authorized. The official language is in Part H of this bill.
Vestal also points to recent development in Iowa and Massachusetts. Iowa governor Chet Culver signed a bill repealing a 2002 ban on stem cell research, and Governor Duval Patrick of Massachusetts has asked the state’s Public Health Council to rescind regulations adopted under Governor Mitt Romney which prohibited the use of stem cell lines created for the purpose of research. An anonymous administration official quoted in this Boston Globe story indicates that Patrick intends to propose expanded state support for stem cell research in a variety of ways.
Meanwhile, both the U.S. Senate and House of Representatives have passed versions of the bill they passed last year expanding the number of stem cell lines eligible for federal funding support. In neither house was the margin large enough to override a veto, so the ultimate outcome—no change in federal policy—seems clear. The rhetoric on both sides, at least in the Senate seems to have been better suited to Oprah than the self-styled world’s greatest deliberate body.Washington Post reporters Rick Weiss and Dana Milbank note a range of factual inaccuracies in the Senate debate, as well as Senators’ invoking numerous tragic illnesses experienced by themselves, family members, and constituents in support of their positions.
Both houses must now pass a reconciled version of the stem cell bill, which President Bush has promised to veto. Neither house seems likely to be able to override this veto, thus insuring that federal policy will remain unchanged. States, however, are continuing to move ahead. Expect it to be this way for a while.
Jim Fossett
AMBI/Rockefeller Institute of Government Federalism and Bioethics Initiative;
(with thanks to Katie DiLello)
Pharmalot!
Ed Silverman, long time medical reporter with the newark star ledger, has shifted over to an on-line blog on the pharmaceutical industry. The blog is well worth a look: pharmalot.com.-Art Caplan
Before Don Imus...the Too Fat Polka
Long before their was Don Imus their was Arthur Godfrey who hosted radio and television talk shows in the 1940s and 1950s. Long before there was political correctness, Godfrey had a smash hit record, called the Too Fat Polka. This song had a famous lyric which went "I don't want her you can have her, she's too fat for me". Well apparently physicians in Scotland are fans of Godfrey's. They have recommended that fat women be turned away from IVF clinics until they lose weight:A leading group of Scottish doctors have recently claimed that Obese women should be automatically barred for NHS fertility treatments until they lose weight. According to the Scottish Committee of the Royal College of Obstetricians and Gynecologists, a woman with a body mass index (BMI) higher than 30 should be placed on a waiting list until she has dieted to an agreed weight.-Art CaplanBeth Heller, holistic fertility expert and director of Pulling Down The Moon, a Chicago based fertility treatment center, agrees that overweight women who lose weight are going to have a better chance at conception. "There is a ton of research which supports the fact," she says.
However, everyone knows that losing the weight isn't easy. As controversial as this debate is, it highlights the need for fertility specific weight loss programs (Like Pulling Down The Moon and Fertility Centers of Illinois' Feeding your Fertility Program) that can help women lose weight while making food choices specifically supportive of conception.
In addition, there are other holistic fertility treatments and community support groups that help women channel their motivation of having a baby into getting healthy enough to carry one. Beth Heller further claims that overweight and IVF is a problem that is just going to get bigger. "The National Institute of Health cites overweight as a major reason why the fastest growing group of women experiencing infertility is those under the age of 25," she says. For further information visit www.pullingdownthemoon.com
So it Goes:
Kurt Vonnegut 1922-2007
"Be careful what you pretend to be because you are what you pretend to be..." - Welcome to the Monkey HouseLabels: Kurt Vonnegut
Is Phoenix Taking Quarantine Too Far?
In a modern day Typhoid Mary case, Arizona has opted to quarantine a man infected with extreme drug resistant tuberculosis (XDR-TB) - in the local county hospital's Ward 41, the section set aside for sick criminals. Robert Daniels has been locked up there since last summer, and is going to be there...indefinitely. He says that he's being denied showers, has to clean with wet wipes, and has had his television, radio, personal phone and computer, etc, removed. He is effectively in solitary confinement, visited only by the medical personal who make sure he takes his medication. And I have to wonder - this really the least restrictive method of protecting the public? While I can understand having to remove someone who's a serious threat to the community during treatment, is (effectively) a jail cell the appropriate place? Why do the Phoenix hospitals not have isolation rooms outside their criminal ward? What are they planning on doing during a major outbreak of any massively contagious disease - toss out the inmates and take over the cells? And why is he being denied a television, radio, personal phone and computer, and etc? It's not like XDR-TB is going to attach itself to an email and infect the world...
Socrates 2.0: The Birth of an Online Masters in Bioethics
In the Scientist this month, I chronicle the development of the Alden March Bioethics Institute's new Master of Science in Bioethics degree [Click here to download a flyer], beginning with my fight with the Apple and Google people and ending with their victory and our cool new program (which replaces a five year-old program using ancient technology and a small pool of visiting faculty):Last summer, I had a religious experience at the Googleplex in Mountain View, Calif. I was on the Google campus by invitation to attend Science Foo Camp, a small gathering of people in science, medicine, and computing. Google, Nature, and the O'Reilly Group sponsored the event. At the meeting, we gathered around tables, pit fires, and indoor tents, as we reached across disciplines using technology.[You can read the complete column and the rest of The Scientist here; in other news about the new masters program, Alicia Ouellette, director of the AMBI Health Law & Bioethics program, was interviewed In the AlbanyTimes-Union about the new Juris Doctorate/Master of Science in Bioethics 3 year degree program. And Albany Business Review discussed the sponsorship of Apple for the new Masters program]
For my session, I proposed the following: Socrates would not teach ethics on the Internet. It was a heady claim to make at the forum where Web 2.0 was invented. At least two people in my session clearly believed they were actually channeling Socrates.
Going into the session, I was really sure of myself. I've taught ethics. Whether my students are future doctors, attorneys, scientists, or physicians, they seem to glean the most when they are forced to consider presuppositions about life and profession. For more than a decade I have held that professors inspire this encounter when they roam the room, lock eyes, and compel contemplation.
Online education, in other words, wouldn't cut it. Sure, there was a place for certain things. You could teach research ethics regulations on a cell-phone browser. Online lecture notes and PDFs of readings? Fine. Chat on the Net has been so effective it even results in marriage. On Secondlife.com, people certainly explore moral boundaries. But learning about the moral life on iTunes? Sorry, not buying that one.
There's no good reason I should have such reticence. I started one of, if not the first, bioethics Web site in 1994; built a unique journal around online debate in 2000; and created the first editors' blog for a biomedical journal in 2004. I waste a lot of time online. Yet when it came time to write a grant to teach research ethics to clinicians and government officials in Ghana, I didn't even consider distance learning. My jet airplane-dependent research ethics training program application fell flat because flying people to America from Ghana to take classes was too expensive. Duh. I began to doubt my convictions.
And so I found myself in Mountain View arguing a case to some leaders of Apple's iTunes University, who were eager to hear that I was wrong. I gave my defense of the Dead Poet's Society's theory of teaching to people who actually use iPods to teach college students. They didn't disappoint.
Right away, we began to test the question. We recorded actual ethics cases in progress, interviewed experts on the questions at hand, and built simulation models for learning the foundations of clinical ethics. We integrated live chats and threaded chat and group projects such as a bioethics wiki. We made it all portable, so that students from India or rural South Dakota could participate. Instead of looming professors, we opened additional dimensions of interactivity, and built a learning community that lasts longer than two hours twice a week. It was so much fun that I found myself working all day and all night, and within three months we'd submitted an online masters program to the State of New York. I forgot Socrates and wanted to meet Steve Jobs.
And so this fall the first class will begin at masters.bioethics.org, an entire program built around these technologies. The pilot certificate program we're offering now has taught us that students would like their professors to have a rewind (and stop) button, want intensive mandatory ongoing conversations, love having a library of relevant interviews with professionals from science and medicine about real cases, and sustain a level of dialogue that I've never seen matched around a physical table. We won't really know whether our program worked until the first class graduates in a year, or perhaps the effects will manifest themselves later as the alumni continue to use our online resources.
So would Socrates teach ethics on the Internet? Maybe, maybe not. But the intensity of real ethical decision-making seems to work with iTunes U and other technologies far better than the Textbook 1.0 approach of ten years ago. And maybe that's the point: Socrates definitely wouldn't have used an anthology.
Labels: AMBI, Masters in Bioethics, online journal, Socrates, The Scientist
MAJOR NEWS: Sorry, Wisconsin: The Jig is Up on Patents in Embryonic Stem Cell Research
From The Foundation for Taxpayer and Consumer Rights in California and The Public Patent Foundation (PUBPAT) via Jon Merz comes the most important news in stem cell research since 2000:PTO REJECTS HUMAN STEM CELL PATENTS AT BEHEST OF CONSUMER GROUPS:Santa Monica, CA -- April 2, 2007 -- The U.S. Patent and Trademark Office has upheld challenges by consumer advocates to three over-reaching patents on human embryonic stem cells and rejected patent claims by the Wisconsin Alumni Research Foundation (WARF), the Foundation for Taxpayer and Consumer Rights (FTCR) said today.
"This is a a great day for scientific research," said John M. Simpson.
FTCR stem cell project director. "Given the facts, this is the only
conclusion the PTO could have reached. The patents should never have
been issued in the first place."The challenges were filed last July by FTCR and the Public Patent
Foundation (PUBPAT) because the three WARF patents were impeding
scientific progress and driving vital stem cell research overseas.
FTCR and PUBPAT argued that the work done by University of Wisconsin
researcher James Thomson to isolate stem cell lines was obvious in the
light of previous scientific research, making his work unpatentable. To
receive a patent, something must be new, useful and non-obvious. The PTO
agreed with the groups.Its decision said, "It would have been obvious to one skilled in the art
at the time the invention was filed to the method of isolating ES cells
from primates and maintaining the isolated ES cells on feeder cells for
periods longer than one year. A person skilled in the art would have
been motivated to isolate primate (human) ES cells, and maintained in
undifferentiated state for prolonged periods, since ES cells are
pluripotential and can be used in gene therapy."The PTO decisions were dated Friday, March 30 but were received today.
WARF has two months to respond to the PTO ruling and seek to change it.
Third party requests for patent re-examination, like the ones filed by
FTCR and PUBPAT, are ultimately successful in having the subject patent
either changed or completely revoked roughly 70% of the time.Dr. Jeanne Loring, a stem cell researcher at the Burnham Institute for
Medical Research, filed statements in support of the re-examination
requests."The real discovery of embryonic stem cells was by Martin Evans, Matt
Kaufman, and Gail Martin in 1981, and none of these scientists
considered patenting them," said Loring. "It is outrageous that WARF
claimed credit for this landmark discovery nearly 15 years after it was
made."In the face of the challenges by FTCR and PUBPAT WARF announced in
January that it would ease its licensing requirements on human embryonic
stem cells."Now that the PTO has ruled, WARF should simply drop all its claims,"
said Dan Ravicher, PUBPAT Executive Director. [ed: yeah, hold your breath indeed...]
The groups said the patents' dubious validity is underscored by the fact
that no other country in the world honors them. As a result, U.S.
researchers have sent research monies abroad where they can avoid paying
royalties to WARF.California voters approved the nation's largest publicly funded stem
cell research program in 2004 with Proposition 71, which allocated $3
billion in grants over the next 10 years.More information about FTCR and PUBPAT's challenges to the WARF stem
cell patents (U.S. Patents Nos. 5,843,780, 6,200,806 and 7,029,913),
including copies of the Patent Office's Orders rejecting the patents,
can be found here, and you canr ead John Simpson's Op-Ed explaining the need for the patent challenges
here.
Labels: patents, stem cell research, WARF, Wisconsin
Hold Your Breath
Not to be left out of the recent slew of video posts, I offer "Hold Your Breath", a new film from the Program in Bioethics and Film at Stanford's Center for Biomedical Ethics (whew, long title). A documentary by Maren Grainger-Monsen, Hold Your Breath looks at multi-cultural miscommunication in medicine. From the website, After fleeing Afghanistan in 1979, Mohammad Kochi settled in Fremont, California and raised his family. Just when life seems to be getting easier for Kochi, he is diagnosed with an aggressive, life-threatening cancer. When Mr. Kochi rejects chemotherapy and instead embarks on a pilgrimage to Mecca, his doctor fears that family members acting as interpreters have misinformed Kochi about the gravity of his disease.Meanwhile, Kochi’s daughter, Noorzia, blames a culturally insensitive health care system for her father’s rapidly declining health.This haunting documentary exposes the poignant clash between ancient Islamic traditions and contemporary medical technology through intimate moments of anguish, frustration and hope.
There are screenings across the country, and select PBS stations will also be airing the documentary this month. For those of us unlucky enough to live in markets without either, a short video clip can be seen here.
[With thanks to Rebecca Garden and Audrey Schafer!] - Kelly Hills
[and thanks for the heads up from Maren Grainger-Monsen! - Glenn]
Labels: hold your breath, maren grainger-monsen, race, Stanford Center for Biomedical Ethics
50/50: Choice About Huntington's Disease on Film
Ok why not. An all YouTube day. We roll like that.This one is a preview of a documentary from filmmakers Ted Bogosian, Barry Levinson and Tom Fontana, with the preview hosted by Danny DeVito; the film, 50/50, explores the dilemma that a carrier of Huntington's Disease faces when she realizes that she has a 50/50 chance of passing the devastating illness to her offspring. [Hat tip to someone named Teddy Bogosian, who emailed us from ClickStar about this "film about bioethics"]
Labels: bioethics on film, genetic testing, huntington's disease
"A world where.."
I can't think of a good explanation for posting this video by Five for Fighting for the Autism Speaks group, unless looking in my own child's eyes is enough. Somehow music and experience open doors to thinking about issues we don't work on in bioethics. Anyway, if you like FfF you'll like this.Labels: autism, bioethics music
Migramatic Shock:
Alan Milstein on the Stanford Prison Experiments
Alan sounds off on the Jon Stewart oddity of the year:What a Milgramatic shock to see Phillip Zimbardo on Jon Stewart the other night to promote his new book. Zimbardo, of course, was the Principal Investigator of the Stanford Prison Experiment in 1971, in which healthy volunteers were recruited to participate in a psychology experiment to explore, allegedly, how good people turn evil. (The subtitle of his new book.) He has made a career and, apparently, a nice living on a human research project regarded by most bioethicists today as patently unethical because it offered all risk and no benefit to the student subjects.One of the main disincentives to even considering an unethical experiment, in addition to the threat of being sued by an enterprising plaintiff’s lawyer, is supposed to be the prohibition against publishing or promoting the results of such a study, even if scientifically sound. That has never stopped Zimbardo or his handlers. The Professor was even brought in to testify on behalf of one of the Abu Ghraib prison guards, opining that his experiment yielded scientific proof that human beings could not help themselves in such situations from turning cruel. The testimony, according to Zimbardo himself, was ignored by the tribunal.
What Zimbardo has never understood is that human beings simply should not be treated as a means to an end, as mere guinea pigs or, to use the terms from another horrible era, logs or material. When an experiment crosses that line, the only evil it finds is in the researcher.
Labels: Alan Milstein, Stanford prison experiments