The ethics of embryonic stem cell research funding

encyc_bioethicsThe National Institutes of Health posted their draft guidelines for the federal funding of embryonic stem cell research last Friday. When President Barack Obama announced his new embryonic stem cell funding policy in March, he said guidelines would be set by the NIH. The new draft guidelines can definitely be changed in response to responses received during the comment period or through promised legislative action, but here’s how they stand now:

These draft Guidelines would allow funding for research using only those human embryonic stem cells that were derived from embryos created by in vitro fertilization (IVF) for reproductive purposes and were no longer needed for that purpose. Funding will continue to be allowed for human stem cell research using adult stem cells and induced pluripotent stem cells. Specifically, these Guidelines describe the conditions and informed consent procedures that would have been required during the derivation of human embryonic stem cells for research using these cells to be funded by the NIH. NIH funding for research using human embryonic stem cells derived from other sources, including somatic cell nuclear transfer, parthenogenesis, and/or IVF embryos created for research purposes, is not allowed under these Guidelines.

So let’s see how the press covered this update. The good news is that coverage of this issue has improved drastically. It could be argued that there was nowhere to go but up, but it’s still nice to see. Reuters had a good and straightforward report about the new guidelines:

They include strict rules on making sure that people who donate unused embryos for research know what they are doing, and why, and are not coerced or paid in any way.

They reverse long-standing limits placed on funding the research by former president George W. Bush, which scientists had said restricted potentially lifesaving medical research.

“We are likely to increase greatly the number of human embryonic stem cells available for federal funding,” acting NIH director Dr. Raynard Kington told a telephone briefing.

So what do the various players in the story have to say? The story mentions that Reps. Diana DeGette, D-Colo., and Michael Castle, R-Del. will introduce legislation broadening the guidelines further. Now that we’re not talking about the Bush era guidelines, I’m happy to see some clarifications about the difference between federal, state and private funds, as the Reuters piece noted:

The guidelines would not affect what scientists do using private funds or even state funds.

U.S. legislation called the Dickey Amendment forbids the use of federal funds for the creation or destruction of human embryos for research. The NIH guidelines affect labs that use cells that someone else would have created.

What I don’t understand about the Dickey Amendment — and what’s not explained here — is what it has to say about these NIH guidelines as it relates to the destruction of human embryos. At least at this point, embryonic stem cell research destroys human embryos in the process of the research. That NIH guidelines don’t permit federal funds for the creation of embryos is only one part of the Dickey Amendment. Must the stem cells already be extracted before the federal funds go into effect? I’m not sure. It would be helpful to know. The Contra Costa Times weighed in on the matter:

Legislation called the Dickey Amendment, which prohibits derivation of new cell lines by federally funded researchers — critical to much of Stanford and UCSF’s research — is unaffected by the NIH proposal.

You can read the text of the Dickey Amendment here. It says that federal funds can’t be used for the creation of a human embryo or embryos for research purposes; or research in which a human embryo or embryos are destroyed, discarded, or knowingly subjected to risk of injury or death greater than that allowed for research on fetuses in utero. So I think the question is left unanswered. The Contra Costa Times story argues that scientists aren’t happy that they don’t get to clone embryos while religious groups are generally pleased:

Obama had walked a line in the center of the political spectrum, he said. Earlier this year, the U.S. Conference of Catholic Bishops warned against going beyond use of spare embryos in fertility clinics, saying it would breach “an entirely new ethical line.” . . .

While scientists are unhappy, [Thomas Murray of the Hastings Center] said, “there can never be a stem-cell policy that at some level doesn’t take ethics into account.”

That first part is very poorly constructed. The U.S. Conference of Catholic Bishops opposes all uses of human embryos for research, even if they pointed out particular problems with creating humans for destruction. So how best to articulate what various religious sources feel about the measure?

The New York Times gave readers much more detail and it was most helpful. The Times story described the NIH guidelines as disappointing to both scientists and abortion opponents. It would be funny — if it weren’t so sad — to think back to the horrific job the mainstream media did in discussing President Obama’s change in stem cell policy last month. Then, seemingly every paper and news channel completely bought the spin that, as Time put it, Obama was “ushering in an era in which it promises to defend science — and the pursuit of useful treatments — against ideology.”

But all of these stories mention that some scientists want no restrictions on taxpayer funds for embryonic research. And, as a result, they’re upset that “ideology” is working against “science.” After mentioning that some scientists are pleased with the results, we learn the following:

Others called the proposed rules a sellout.

“I’m disappointed,” said Dr. Irving Weissman, the director of the Stem Cell Biology and Regenerative Medicine Institute at Stanford. Dr. Weissman accused the health institutes of “putting this ideological barrier in the way” of treating disease.

Abortion opponents predicted that the administration would soon embrace less restrictive stem cell policies.

“This is clearly part of an incremental strategy to desensitize the public to the concept of killing human embryos for research purposes,” said Douglas Johnson of the National Right to Life Committee.

What annoyed me so much about the uncritical media acceptance of the “science trumps ideology” spin put out by the administration last month was that all policy decisions are about ideology. This was obviously not going to be an exception, dealing with human life and all that. And the Times story goes on to note that the NIH director specifically says they discussed ethics when making the guidelines. That NIH thinks it’s fine to destroy some embryos for research and not others is an ethical decision, not a scientific one. And it’s better for the media to acknowledge this and write stories that permit discussion of the ethical battles.

The story is just well done and interesting. It mentions that NIH is “sitting on more than $10 billion in stimulus money” and eager to expand financing for stem cell research. We also learn that NIH financed 260 research projects, at a cost of $88 million, in the last year of the Bush administration in embryonic stem cell projects. I don’t seem to recall learning that when we were being told how Bush “banned” embryonic stem cell research. The article also notes that private funds have been used to create stem cell lines from “poor-quality” human embryos and that the research might not be eligible for taxpayer funds since the parents of the embryos might not have been told they could donate the embryos to other couples.

For those looking for more of an overt religious angle, head on over to Dan Gilgoff’s U.S. News & World Report blog where he notes how various religious groups and individuals are reacting to the NIH guidelines. I’d love to know how Douglas Kmiec’s gets to be described as a “social conservative.”

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  • Dave

    Mollie, I’ll use myself as an example of what the Dickey Amendment means. Stem cells to treat type 2 diabetes can be derived from discared IVF embryoes. Applying that to my diabetes would involve creating a one-cell clone of myself, harvesting stem cells, and chivvying them into becoming healthy islet of Lanjerhans tissue that my body will not reject. As long as federal money cannot be used to create that one-cell Dave clone, there is a barrier to this treatment.

    As I’ve said before, I’d far rather be treated by my own adult stem cells, suitably tweaked, so some woman doesn’t need to go to the bother and risk of coming up with an egg for the mini-me. She’s not the patient; I am.

  • Martha

    Since the scientific press seems to have no problems with playing the prophet, let me throw my hat into the ring and get in on the game too.

    Ten years from now and $$$$$$ later, the reports will be “Wow, the way the embryonic cells develop into specific tissue types is reeeeealllly complicated, y’know? On the plus side, we now know 999 drugs therapies that won’t work! We need yet more $$$$$ and another five to ten years – but definitely for sure right then the blind will see, the lame and the halt will walk! Don’t give in to those religious nutjobs who want to drag us all back into the Dark Ages!”

    Meanwhile, there is absolutely nothing preventing the venture capitalists and drug companies pouring their own private money into this line of research.

    Yes, they’re just queuing up to throw cash at it, aren’t they?

  • Judy Harrow

    Martha

    Funny you should mention the part about the blind seeing. That seems to be one of the first actual usable benefits from stem cell research. Here’s the link:

    http://www.newscientist.com/article/dn10125-stem-cells-put-a-stop-to-macular-degeneration-.html

    I have macular degeneration. I also have kidney failure. I do not share your belief that embryos or fetuses are human beings. I am not willing to sacrifice my eyesight, let alone my life, for your religious beliefs.

  • Jerry

    it’s better for the media to acknowledge this and write stories that permit discussion of the ethical battles.

    Trying to ignore ethics in science worse than bad reporting. It was not so long ago that we had the “Tuskegee Study of Untreated Syphilis in the Negro Male”, for example. These serious ethical issues really need to be explored and debated. I’m glad to see that the current round of coverage is one step in that direction. I agree with Mollie that even this round has issues but at least it’s better than before.

  • dalea

    I’d love to know how Douglas Kmiec’s gets to be described as a “social conservative.”

    Indeed. Based on his Prop8 work, he should be correctly described as ‘ultra extreme social conservative Douglas Kmiec’.

  • http://www.getreligion.org Mollie

    dalea,

    Interesting that opposing Prop8′s legal defense makes you an ultra extreme social conservative.

    http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2009/03/01/EDFU166H0A.DTL

  • Jerry

    Mollie,

    That reference to the SF Chronicle story is very interesting but I don’t see how that is linked to your statement that preceded that reference since one of the writers was in favor and one opposed to Prop 8 itself.

  • http://www.getreligion.org Mollie

    I was pointing out that Doug Kmiec opposed Prop 8′s “legal defense.” Which is what that SF Chronicle op-ed is arguing against.

    Kmiec can be somewhat hard to nail down . . .

  • dalea

    Mollie,

    Interesting that still working to deny Gay relationships the term marriage is seen as a sellout of social conservativism.

  • Jerry

    Mollie,

    What I took from that story you cited is that both one person opposed to prop 8 and one in favor were both calling for “marriage” to be a religious ceremony and a separate agreement to a relationship contract which would be a state matter. I found it interesting that some on both sides of the ‘gay marriage’ debate are looking at that separation with favor.

  • Brian L

    Judy,

    the New Scientist story you linked to does not claim restored sight to the blind.

    Some people are not willing to sacrifice other human lives for your religious beliefs.


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