September 2010 Archives

Embryonic Stem Cells Part II: Embryo Adoption, the Dickey-Wicker Sticky Wicket

Faustian Bargain: How The Federal Government Funds Anti-Science as Well as Science

In 2001, "pro-life" plaintiffs sued the federal government to stop the funding of human embryonic stem cell research. In response, the US government started the "Embryo Adoption Public Awareness Campaign" program, evidently to appease the pro-life evangelizers. Since 2002 then, HHS has granted $20 million to mostly fringe Christian "embryo adoption" programs that promote an extreme anti-science view of human development. In this way, the US government funnels tax-payer dollars to sell pro-life ideas that challenge and attempt to overwrite science.

In our last post, "Shock and Awe Strike Again, Embryonic Stem Cell Research Part I" we discussed the ongoing lawsuit by evangelical groups to stop stem cell research, specifically, Judge Royce Lamberth's preliminary injunction to stop Obama's reinstatement of some federal funding for human embryonic stem cell research (hESC). Lamberth used the Dickey-Wicker Amendment to stop any "piece of research" involving the destruction of human embryonic stem cells from getting federal funding. We asked whether scientists should have been "stunned" by the move, and pointed out that the same group of fringe plaintiffs filed a lawsuit against HHS in 2001. In this post we pick up where that post left off. We explore the concept of "embryo adoption" being advanced by agencies like Nightlight Christian Adoptions, which just sued HHS again.

Of the many Americans who self-identify as Christians (many don't), most recognize the value of science, the process of embryo development, the difference between a baby and a cell, the value of stem-cell research to saving lives, and finally the value of in-vitro fertilization (IVF) in helping couples have babies.1 As we wrote in 2006, several highly respected theologians and scientists, including the head of NIH Francis Collins, have written books about how to be Christian while at the same time living in the modern science and technology world as a modern human being.2

On the contrary, the "pro-life", HHS funded "embryo adoption" agencies do the opposite. Although nothing but science has made their business possible, they try to pretend science is irrelevant. The agencies claim that they have the right and authority to decide who qualifies to try to bear an embryo/child. They make each childless couple who wants their services go through extended screening - as if the embryo were a child.

Interestingly, while they self-servingly label embryos as children, they then seem to have no bioethical qualms about selling them. Of course embryos are not children, nor are they aborted fetuses, as some people mislabel them. They come from petri dish derived egg and sperm embryos donated by couples who couldn't conceive naturally. The couples choose to donate to research rather than discard the embryos. The embryos do not come from inside a human, and many of them, because of the health of the parents, or the process of laboratory in-vitro fertilization, are unhealthy, nonviable and will never develop. This is a point that many people on all sides miss, so I'm going to say it again. Most of these embryos are not viable. By signing up to their embryo adoption program, couples implicitly or explicitly accept the agencies' misleading anti-science marketing, but then paradoxically undergo cutting-edge scientific procedures to try to have a child.

These "embryo adoption" groups call this fringe thinking "Christian", and unfortunately, HHS funds them -- apparently they'd rather mainstream these anti-science beliefs then risk telling the truth in this heated political climate. Stunningly, while collecting their millions in grants, these same pro-life agencies then sue HHS to halt life-saving stem cell research.

No matter what religion you claim, whether you're atheist or agnostic, whether you know or care about IVF, fertility, or adoption, you should wonder why the federal government is giving millions of dollars to evangelical groups so that they can inculcate people with these medieval notions of science, human development, and family building. Furthermore, why is the HHS, dedicated to promoting science and the health of Americans, funding groups that turn around and sue them to stop that science?

Biting The Hand That Feeds

You may remember Nightlight Christian Adoptions from former President George W. Bush's Stem Cell Address to the nation in August, 2001. By then, the lawsuit against Health and Human Services (HHS) on which Nightlight was a plaintiff had been stayed, pending Bush's review of stem cell policy. In his address, Bush gave Nightlight special kudos and flanked himself with children born through frozen embryo transfer (FET). He called them "snowflakes", which coincidentally or not happened to be the name of Nightlight's "embryo adoption" program.

Shortly thereafter, Nightlight Christian Adoptions started receiving what now amounts to millions of dollars in grants from the very agency they had sued, HHS. Nightlight uses these funds to promote "embryo adoption", which is the explicit purpose of the "Embryo Adoption Public Awareness Campaign" run by HHS's Office of Population Affairs (OPA).3 Among other activities, Nightlight sponsors bioethics essay contests for law students, makes videos about embryo adoption, sends mass mailings to IVF clinics, holds skating parties for former "snowflakes", and advances notions about reproduction and development that fit its pro-life agenda. Nightlight has opened branches across the county and has raised their fees, thanks to HHS and >$2 million in funding. (Christian Newswire "Massive New Media Campaign Raises Public Awareness of Embryo Donation & Adoption to Remarkable Heights, May 28, 2008). So is this lawsuit all the thanks HHS gets?

Nightlight's Public Business Proposition: Failure is Success?

In their lawsuit, plaintiff Nightlight Christian Adoption said they oppose life-saving human embryonic stem cell research (hESC) because their business would suffer when frozen embryos are used for research.2This is misleading for several reasons. One, although Nightlight Christian Adoptions says 500,000 frozen embryos are available for adoption in clinics, their number is not accurate. Many of those several cell embryos aren't viable because they've been frozen too long. Many more aren't viable because most embryos that are only several days old won't develop because of genetic defects, implantation problems, or other issues.

Furthermore, multiple studies have shown the only between 2-3% of couples choose to give their embryos to other couples, as this 2007 Kaiser Network study shows. But despite this research showing couples' reservations about giving up their genetic material, Nightlight's (HHS funded) promotional materials advertise that in their poll, "they asked Americans" if they would give up their embryos and 70% said yes. And despite the high enthusiasm they polled, they receive HHS funding for "awareness" campaigns.

Even if hESC were a threat to their business, this shouldn't matter to Nightlight. Their awareness campaigns and expansion conflict with their website's FAQs. For instance, in one hypothetical question, the agency asks itself - then answers:

Question: "Does Nightlight encourage the creation and freezing of embryos?"

Answer: "No, we are trying to provide a loving option to the families of the 500,000 (estimated) embryos frozen in clinics throughout the United States...We would really prefer to work ourselves out of a job!"

So lets review. 1) They're spending money suing the government with claims that human embryonic stem cells are going to put them out of business; 2) They're suing to get more HHS funds for awareness campaigns and expanding their business with those funds; and 3) claiming on their website that they're trying to use all the embryos available to work themselves out of "a job". Head-spinning.

How $20 Million Dollars From HHS Funds The Controversial "Embryo Adoption Awareness"

Nightlight's Snowflake embryo adoption program was pretty obscure until a few years ago. In August, 2002, the program had been in existence for 8 years, and only 18 children had been born, about 2 per year. Couples were obviously not convinced this was a good option. And thus it wasn't a good business model either. Nightlight was charging "$4,500 to broker an embryo transfer between couples. (Meckler, L., Aug 20, 2002, AP). That year Senator Arlen Specter inserted into a Health and Human Services spending bill a grant that distributed almost a million dollars Nightlight Christian Adoptions between 2002 and 2004. The agency received another $1.1 million dollars between 2007-2009 according to the US government tracking tool at transparency.gov (accessed 09/2010) (the tool is very disappointing on this matter because it has incomplete records for 2007-2009 and no records of previous years). In total, here's how much HHS's OPA publishes it has spent on the "Embryo Adoption Public Awareness Campaign" (accessed Sept. 2010):

FY 2002 $ 996,000
FY 2004 $ 994,100
FY 2005 $ 992,000
FY 2006 $ 1,979,000
FY 2007 $ 1,980,000
FY 2008 $ 3,930,000
FY 2009 $ 4,200,000
FY 2010 $ 4,200,000

In addition to Nightlight Christian Adoptions, HHS also funds Bethany Christian Services, Baptist Health System Foundation, and the National Embryo Donation Center -- all "embryo adoption" organizations that evangelize "pro-life" agendas. Recently, a far smaller number of grants have gone to secular organizations, but importantly, since the federal government initially funded exclusively religious organizations, HHS helped the pro-life agencies secure a foothold in the market. In fact, the US Department of Health and Human Services basically made the market for these pro-life agencies. (Note that although the HHS Embryo Adoption Public Awareness Campaign budget has increased, Transparency.gov only lists "New Grants" for 2007-2009. These amount to a fraction HHS's published budget, which makes it hard for us all to figure out where the money goes.)

Changing the Meaning of the Words "Person", "Embryo", "Adoption", "Donor"

In order for embryo adoption organizations to succeed they need embryos, which are in scarcer supply than they advertise, for reasons outlined above. The embryo adoption agencies also need to change perceptions, that is, change the meanings of words long defined by science and secular organizations. This is how the Department of Health and Human Services grants help.

These fringe groups start by using the phrase "embryo adoption", instead of "embryo donation". This is subtle, but important. The procedure of embryo donation has been around forever, offered sparingly by IVF clinics, available with a simple contract. Embryo "donation" as offered through fertility clinics meant: "you can donate these embryos to another couple". There was no religious intermediary collecting a fee and deciding who qualified.

The US government HHS funded campaign has served to advance the phrase embryo "adoption", instead of "donation". In their campaign, pro-life groups and "embryo adoption" agencies hijacked the term "donation" and now use it to refer to what IVF patients, who pay tens of thousands of dollars per IVF cycle, must donate (embryos) to the "embryo adoption" agencies -- ie: 'you donate your very expensive and dear embryos to us, and we put them up for (Christian) adoption" and profit from it.' That's an "awareness" campaign.

"Microscopic Americans"

The American Society For Reproductive Medicine (ASRM) writes here about the biologically and ethically deceptive practice of changing the labeling of embryo "donation" to "adoption". The phrase embryo "adoption" imposes the false notion that these few day old embryos are people. This mischaracterization is promoted by politicians, the media, and those receiving HHS funding. For example:

  • "I believe every embryo is a child that deserves a chance to be born", the director for Nightlight Christian Adoptions embryo adoption program told the Associated Press. "This is more than mere tissue. They need an option they haven't had in the past." (Meckler, L., Aug 20, 2002 "Bush administration distributing nearly $1 million to promote embryo adoption", AP) [The "they" refers to the non-sentient embryos, many that have no chance of being viable]
  • "Frozen embryo adoption offers hope to microscopic Americans". (Murdock, Deroy, August 27, 2001 The Adoption Option, National Journal ) (hat tip Salon)
  • Senator Arlen Specter: "If any of those embryos could produce life, I think they ought to produce life." Calling his grant a "test", Spector said: "Let us try to find people who will adopt embryos and take the necessary steps on implanting them in a woman to produce life".

Like many other proponents of embryo "adoption", these people skip over, ignore or just don't know the actual viability of embryos, as I mentioned above. It's misleading to say that these are simply "unborn people", as the head of "Nightlife Christian Adoptions" called them, which need a warm cozy womb to be "implanted". It's misleading to say that a clump of nonviable cells are in need of "an option". Such rhetoric is a disservice to potential recipients, to science, and to the American public.

The embryos in question are the product of IVF. About 1 in 10 people seek fertility medical intervention, often in-vitro fertilization (IVF), because some part of their reproductive anatomy or physiology isn't working. The IVF embryos produced are therefore often flawed and don't develop. The recipients also have fertility problems, and a portion of these issues involve receptivity of the womb to embryo implantation. Doctors don't simply thaw an embryo out and plunk "microscopic Americans" into a uterus 'to let them thrive'.

Unlike the perception given by Senator Spector, Nightlight, and the conservative columnist, the doctors don't "implant" the embryos. After thawing, they're "transferred" into the woman in a process called "Frozen Embryo Transfer" (FET). They'd like to make you think it's like thawing a pie and popping it into the oven. It's not. Implantation is a sensitive physiological process, dependent on different factors and a different process then thawing. 50% of the embryos will not survive thawing, and most of the remaining 50% won't implant in the uterus, won't develop, and won't be born.

What Happens To All Those Other Homunculi?

Nightlight's "Snowflake" program "matches" frozen embryos of IVF patients with recipient parents, and requires a homestudy and counseling to assure that the parents are fit to purchase the embryos, Nightlight also promotes the idea that frozen embryos (most ~2-9 cells) the majority of which are not viable, are children.

The program fee is currently $8000, which doesn't include things like the homestudy -- $1,500-$3,000, medical costs (hormones, FET cycle and doctor's fees), etc. The $8000 fee will buy one batch of embryos, unless those cells do not result in a birth, in which case the couple gets another batch, and if those don't result in a birth then the couple will get a third. If none of those work the couple can pay another $2,500 for some more frozen embryos. You may be asking yourself, why would they need so many batches of embryos if each frozen embryo is a "microscopic American"? You would be asking an excellent question.

The actual FET success rate is difficult to discern from Nightlight's FAQs, but here's what they say (August, 2010):

  • "To date Nightlight has matched 454 genetic families (with approx. 3314 embryos) with 312 adopting families."
  • "2474 embryos have been thawed for transfer of which 54% (1328) were viable."
  • "There are 225 Snowflakes children and 25 adopting families are currently expecting 32 babies"
  • "About 1/4 of the Snowflakes moms who have achieved a pregnancy have carried multiples."

We could add 225 Snowflake children +32 expecting babies and get 257 births of 2474 embryos thawed, which would make the birthrate about 10% (lower than I would expect). That number is surprisingly low. But also note that apparently 2/3 of the genetic families had embryos, and about 1.4 of the 3314 embryos only gave 2474 thawed. This looks like many that somehow didn't even get to the thaw point. At any rate there's a reason why the company offers multiple batches for one price. But the agency fee is only one a portion of the price. Each time a couple goes to the fertility clinic for a transfer, they pay another fee. Each time a couple needs to do another cycle, the women subjects herself to powerful hormones. So sub-par embryos and inaccurate marketing, costs these childless couples money and create an extra health risks for women.

Although many Americans are being taught (because of HHS) that these embryos are "unborn children", the fact is, embryos are not children, just several day old cells with a small probability of being able to develop into children with the help of decades of experiments in IVF science.

It's Not Only About Semantic Changes, IVF and Embryo "Adoption"

"Embryo adoption" is a pretty middle of the road concept when you look at the what some pro-life people and groups lobby for. Christian Brugger Ph.D, wrote at the site culture-of-life.org, (Village Voice) about a 2008, HHS funded conference on embryo adoption attended largely by "devout Protestants" and Christian embryo adoption "facilitators". He reported that these two camps agreed that the embryos "stranded in U.S. concentration cans" were a problem. But some Catholics and "committed Christians" also spoke about the "intrinsically evil" problem of heterologous embryo transfer (HET), stressing that women should only get pregnant through marital intercourse. That is, as Brugger reports, many people say that this whole "embryo adoption" campaign is an attempt to give embryos legal rights by granting them legal "personhood", which would then bring into question fertility treatments, abortion, and certainly embryonic stem-cell research.

Fundamentalist Christian intervention into fertility and family building may seem patronizing, but it could be worse, as this exchange reported in the Village Voice shows:

'In July 2001, JoAnn Eiman, then-director of the Snowflakes program, traveled to Washington, D.C. to address Congress. At one point in the panel discussion, Congresswoman Carolyn Maloney, (D-New York) asked Eiman if she was in favor of actually forcing people to place their excess embryos up for adoption. Eiman said no. But later, in California, after the Congressional office sent her a transcript of her testimony and asked her to make appropriate corrections, Eiman changed her mind.

'We force people to put their kids into foster care if they're not good parents,' she says. 'If parents aren't parenting their children, aren't we responsible for making sure they do? Do we leave them frozen forever?'"

Thus, the Snowflakes director goes one step further in characterizing unviable clumps of cells as frozen children, she claims they're actually victims of negligent parents. If you scan through the evangelical Christian media on this, and public comment forums like this, where 50,000 people left comments about stem cell research for the NIH, it's easy to see that many people don't have the faintest idea about human development, about what a "stem cell" is, about what an embryo is, or about the potential of embryonic stem cell research. These people are obviously swayed quite easily, and they are being sold a false vision of an embryo not as a few cells in a petri dish with a small and precarious chance of healthy development with the help of science, but as a "unborn baby". Because of various pro-life campaigns, these people actually visualize an embryo as a "microscopic American", a preformed human, a homunculus. The "Embryo Adoption Public Awareness Campaign" of the US Department of Health and Human Services promotes this deception.

To summarize, scientists have developed fairly effective IVF through the rigorous application of the scientific method over many decades. Many embryos are not viable and do not survive. The procedures are still evolving, that is, they're still experimental. But in hopes of having kids, families spend tens of thousands of dollars on IVF -- they re-mortgage their houses to pay for these very expensive procedures. Then some fringe "embryo adoption" evangelists get these same couples to "donate" their embryos, obtained through these expensive, difficult and experimental scientific procedures. This, so that these groups can make money off the embryos while claiming to be "saving little human lives". Then these same "embryo adoption" groups sue the government, the very same Department of Health and Human Services which is supposed to be assuring the science and health of Americans, the very same HHS that has largely enabled their "embryo adoption" businesses. Millions of dollars in federal grant funding is being used to basically defile science and control how people build families, by promoting a view of human development that happens to be dead wrong.

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1 It's true, as the NIH wrote recently, that halting hESC research funding as the judge ordered on as a result of Nightlight Christian Adoptions et al, will stop critical research on diseases like cancer and Parkison's, which the NIH has invested millions of dollars pursuing. But although Nightlight sues to halt lifesaving research, paradoxically Nightlight is all about leveraging some of the very same research, IVF research, that their business depends on.

2We don't often talk about religiously contentious issues, in fact perhaps the last time we did was in 2006, in "Science, Faith, and Books", where we wrote: "Acronym Required generally veers away from discussing of religion and science, except when religious fundamentalists tromp into science territory and we feel compelled to join the crowd and give them a bit of a swat."

3 This is housed in what was until 3 days ago the "Office of Public Health and Science (OPHS)" -- it's now the "Office of the Assistant Secretary for Health" (OASH).

Embryonic Stem Cells Part I: Shock and Awe Strike Again

Last week, U.S. District Judge Royce Lamberth issued a preliminary injunction to stop Obama's reinstatement of some of the federal funding for embryonic stem cell research.

The plaintiffs included Christian Medical Association, the Nightlight Christian Adoptions, an agency that sells the use of frozen embryos it calls "snowflakes" - from fertility clinics, two PH.D. scientists, James Sherley of Watertown, Massachusetts, and Theresa Deisher of Seattle, who do research on adult stem cells and claim that allowing embryonic stem cell research wrecks their chances of getting federal grants. Other plaintiffs in the suit were clients for adopted embryos, and the actual embryos frozen in IVF clinics.

Lamberth previously ruled that none of these plaintiffs or cells had legal standing. However, the two Ph.Ds won standing when they appealed, on grounds that their adult stem cell research would be compromised if they had to compete for federal grants with embryonic stem cell research. Lamberth issued the preliminary injunction based on his judgement that the plaintiffs would prevail when the case went to trial, therefore they needed immediate relief because they're livelihoods were impacted by Obama's expanded hESC funding directive.

Judge Lamberth's decision was based on the Dickey-Wicker Amendment attached to every Department of Health and Human Services (HHS) bill since 1996. The rider was a pro-life fueled measure, intended to prevent cloning for research purposes. Since 1996, the Dickey-Wicker Amendment has ostensibly prohibited the use of federal funds 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 under" certain existing laws."

Nevertheless, three administrations, the Clinton, Bush, and Obama, have allowed various levels of federal funding on research on embryonic stem cell lines. The judge's injunction goes so far as to roll back former President Bush's limited acceptance of federally funded stem cell research for certain stem-cell lines created by 2001. The Federal government has requested a stay (.pdf) of the injunction. Who will prevail?

Science Community Stunned

The legal move was a blow to the science research community. Said NIH Director Francis Collins: "The NIH was frankly, I was stunned - as was virtually everyone here at NIH - by the judicial decision yesterday".

But back in 2001, prior to the 2002 elections in which Republicans gained seats, a similar group of plaintiffs also sued the government. The plaintiffs in that suit, Nightlight Christian Adoptions et al v. Thompson, included Nightlight Christian Adoptions, the Christian Medical Association, and two couples who wanted to adopt embryos. The suit said that stem cell research reduced availability of embryos for adoption; and Dr. David Prentice, a former professor of life sciences at Indiana State University asserted that there were better alternatives to human embryonic stem cells (hESC). Prentice is now a fellow at the Family Research Council.

Now, nine years later, right before mid-term elections and after Obama plans to expand funding for stem cell research, we have basically the same lawsuit, from basically same plaintiffs.

People have various opinions about what the injunction means and how it will progress in the courts. A lawyer and commenter here at concurringopinions.com discussed why the government will prevail (or won't).

Some scientists speculate that the importance of federally funded embryonic stem cell research has faded, because so much work is done privately. Others, including the plaintiffs, argue that inducible pluripotent stem cells (iPSC) or adult stem cells are just as promising. "Pro-life" and Christian groups argue that the embryos are people which shouldn't be used for research, even if it will save lives. But scientists agree that embryonic research is at least a necessary prong to pursue potentially life-saving research, and many people, including Christians, agree.

The plaintiffs' arguments do not persuade scientists for many reasons. Their claim to economic injury is not only unconvincing on its face, considering that the plaintiffs don't do research and the NIH funding structure evaluates all promising technology, it's dwarfed by the impact that stopping the research would have on the lives of sick people. As well, the livelihoods of many science researchers are in jeopardy, as is the investment of millions of dollars of government funding that the judge's order seeks to abandon ~24 research projects in which the government has spent $64 million (.pdf), now threatened because they had been scheduled to receive $54 million in continuing NIH funding at the end of September.

Should Scientists Have Been Surprised?

I was. But maybe I wasn't paying close enough attention. Or maybe I didn't want to believe that such anti-reason would even get a chance. But apparently, all it took was the "right" plaintiff and the "right" judge, at the "right" time.

Maybe it's a tempest in a teapot, as many seem to think. Maybe Lamberth had an off day and will change his mind, maybe the courts (moving right every day) will come to their senses. But at the moment, those who want to stop hESC seem to be determinately bulldozing things their way, decade after decade.

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