On red alert

As I said in yesterday’s blog “Charis Thompson: Why we should, in fact, pay for egg donation”, on Wednesday morning we learnt that the place where Declan gets his breakfast every weekday and I get my food for the day, the Catholic Sisters of Mercy Dellow Centre, is closed next week Monday to Wednesday, a first in over two years; and that I am pretty much on red alert: for example, two days after the date on a letter from the European Court of Human Rights advising that Declan’s case would be dealt with “as soon as practicable”, our main bag, containing all our money and documents, was robbed in the centre (see blog of 20 June “Letter from the European Court of Human Rights”). My eyes have been particularly on our sleeping pitch – since 7 September we have been sleeping tucked away, about twenty paces from the side entrance of a building, down some twelve steps; prior to that we slept for almost two years in a porch.

I’m afraid I am spot-on: in addition to being told on Wednesday night to stay away until 1.00am due to there being a “function”, last night we were told exactly the same and the guy so effectively communicated how funny it is that we get up at 4.20am (6.20am on weekends) that I am convinced this is going to be a nightly occurrence. On 10 September, after we bedded down elsewhere, I was arrested for refusing to move on as a result of having nowhere else to sleep (see blog of 11 September “I am arrested for breach of the peace”).

I believe there is a link between us getting a maximum of three hours sleep for the past two nights and the work I have being doing this week on therapeutic cloning, also known as somatic cell nuclear transfer (SCNT). As I wrote in Tuesday’s blog “Egg shortage hits race to clone human stem cells”, I am Googling leading bioethicist, Insoo Hyun of Case Western Reserve University, Ohio – in a Nature commentary titled “Fair payment or undue inducement?” he calls for women to be paid to donate eggs for stem cell research on the same basis that research participants are compensated for taking part in other medical research; unfortunately you need to make a payment to read the commentary.

Because we are getting so little sleep, I am cutting my losses and concentrating exclusively on SCNT: I am putting together all the content that will be on my website in support of nuclear transfer – the blog of 1 November “Can a cell have a soul?” describes what this website will contain, including with respect to human embryonic stem (hES) cell research. Among the resources on SCNT that I am assembling is a 2007 report by the ethics committee of the American Society for Reproductive Medicine, stating: “Financial compensation of women donating eggs for infertility therapy or for research is justified on ethical grounds.” Also the testimony of scientists before legislators in Massachusetts (2005) and California (2006) will be high on my list of experts calling for a relaxation of rules restricting the compensation of egg donors to boost the supply of human eggs needed for nuclear transfer (Kaplan, Los Angeles Times, 13/9/06).

On our other SCNT front, Declan’s email inviting scientists and academics to sign his petition to the UN is still very much in the firing line. The issue of spam was dealt with in the blog of 18 November, including that on 29 February Declan emailed the Home Secretary, Jacqueline Smith; and that the NAC website was suspended on 8 March, three days after the Home Office denied there was a warrant to intercept his communications. Including the 70 emails I sent yesterday to the Department of Cell & Tissue Biology at University of California San Francisco (which yielded zero out-of-office autoreplies), this week from a total of 318 emails there has been one signature – last week, it was two signatures from 661 emails; three weeks ago, two signatures from 640 emails; and five weeks ago, one signature from 1,072 emails. All the more reason to concentrate on the contents of our SCNT campaign.

Charis Thompson: Why we should, in fact, pay for egg donation

Yesterday morning we learnt that the place where Declan gets his breakfast every weekday and I get my food for the day, the Catholic Sisters of Mercy Dellow Centre, is closed next week Monday to Wednesday – a first in over two years. I am pretty much on red alert: for example, two days after the date on a letter from the European Court of Human Rights advising that Declan’s case would be dealt with “as soon as practicable”, our main bag, containing all our money and documents, was robbed in the centre (see blog of 20 June “Letter from the European Court of Human Rights”).

Primarily, I have my eyes on our sleeping pitch – since 7 September we have been sleeping tucked away, about twenty paces from the side entrance of a building, down some twelve steps; prior to that we slept for almost two years in a porch. Last Friday, we were told that we couldn’t bed down due to there being a “function” and had to stay away until 1.00am (see blog “Threatened with arrest”); and on 14 November dim bulbs in the spotlights above us were replaced with very powerful ones (see blog “Our sleeping pitch is targeted”). I, in particular, don’t need to be reminded that on 10 September, after we bedded down elsewhere, I was arrested for refusing to move on as a result of having nowhere else to sleep (see blog of 11 September “I am arrested for breach of the peace”).

I am right to be on alert: last night we had to again stay away until 1.00am due to a “function” – we get up at 4.20am M-F (6.20am on weekends) so we got less than three hours sleep. If all it takes to deprive us of sleep is some lights in the building and a couple of cars in the courtyard, I may very well take a stand and politely request they call the police, especially since we do not obstruct or disturb anyone. On 26 February police officer 9191 referred to me in our local train station as “a piece of shit” that should be put away (see blog of 1 March “Interception of communications”); after two years surviving in the street, I could still end up being put away.

And the emails I send to scientists and academics inviting them to sign Declan’s petition to the UN on research cloning of embryos and stem cells? Well, the vast majority of them are still being dumped into spam boxes: yesterday and the day before I sent a total of 248 emails which yielded three out-of-office autoreplies and just one signatory – to date the petition has been signed by 587 scientists and academics, including 24 Nobel Laureates.

An expected to be of high quality egg from a 32 year old woman

As I wrote in the blog of 26 November “Therapeutic cloning offers hope of treatment for Parkinson’s”, a chief objective of our campaign in support of therapeutic cloning, also known as somatic cell nuclear transfer (SCNT), is to propagate the call of leading experts for a relaxation of rules restricting the compensation of egg donors to boost the supply of human eggs needed for nuclear transfer. I am still Googling leading bioethicist Insoo Hyun of Case Western Reserve University, Ohio – in a Nature commentary he called for women to be paid to donate eggs for stem cell research on the same basis that research participants are compensated for taking part in other medical research; we want to make his argument central to our campaign for nuclear transfer. I am also reading the 4 September meeting minutes of the Empire State Stem Cell Board Ethics Committee (New York) because they mention the payment issue – the Committee makes recommendations regarding scientific, medical and ethical standards to the ESSC Board Funding Committee which oversees and administers $600 million in funding to promote stem cell research and development in New York State.

Meanwhile, I have come across an argument from Charis Thompson, who is an associate professor in the Department of Gender and Women’s Studies at University of California Berkeley Stem Cell Center. The research article summary (published 27 February 2007): “Why we should, in fact, pay for egg donation”, reads:

In this perspective, I shall argue that women who donate eggs solely for human embryonic stem cell research ought to be compensated. My argument rests on three inter-related principles. First, it is important to recruit the healthiest possible egg donors to minimize the risks of donation. This would relieve pressure to donate on those suffering from diseases that might be treatable with stem cell-based therapies, who are likely to be at greater risk from donation. Second, I believe that it is crucial to be pro-active in building representative stem cell banks, especially in stem cell initiatives paid for, in part, by the public/government. The right of all groups to participate in and benefit from equitable and safe research must be developed for egg donors as for other kinds of research participants. Particular attention should be paid to the opinions and desires of women from historically underserved populations as to how to conduct donations and guide research so as to serve all members of society. Third, reasonable payment would undermine tendencies for domestic and international black and grey egg markets for stem cell research to develop. I then suggest replacing the question of compensation with the question of harm mitigation as the central donor protection issue.

Robert Steinbrook, a New England Journal of Medicine national correspondent, says in an article titled “Egg Donation and Human Embryonic Stem-Cell Research” that it is “inconsistent to compensate subjects for undergoing certain invasive procedures but not others or to allow compensation for egg donation for reproductive purposes but not for research.” He points out that the ethics committee of the American Society for Reproductive Medicine cites an estimate that egg donors spend “56 hours in the medical setting, undergoing interviews, counseling, and medical procedures related to the process”. Some bioethicists, he says, argue that egg donors should be compensated – on the basis of the time and discomfort associated with the process, not the number and quality of the eggs that are produced.

According to Bonnie Steinbock, a professor of philosophy at the State University of New York at Albany who has studied egg donation, in the absence of a consensus that no egg donor should be compensated, payment for donations for research is ethically acceptable. In an interview, Steinbock explained: “Any time that we ask people to do things that impose significant burdens and some degree of risk, fairness may require that they be adequately compensated. At the same time, there’s a general consensus that it would be improper to offer enormous sums of money to egg donors that could sway their judgment” (Steinbrook, NEJM, 26/1/06).

Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University, is quoted by the Washington Post as saying that participants in other kinds of biomedical research are compensated for their time, inconvenience and rigors of participating. So why, she asks, should egg donors be treated any differently? There are ways to guard against exploitation of vulnerable women, she said. One would be for local boards that oversee research to make sure that donors are recruited from a wide variety of groups rather than just the economically disadvantaged, she said. And limits can be set on the number of times any one woman can participate, she said (Ritter, Washington Post, 20/1/07).

Egg shortage hits race to clone human stem cells

Human embryo clone, used for stem cell research

In October, the research community in the UK won over a majority of the public and convinced Parliament to approve some of the most permissive embryonic stem (ES) cell research provisions in the world, said Nature Reports Stem Cells. Speaking this July at the European Science Open Forum in Barcelona, Spain, Stephen Minger, director of the Stem Cell Biology Laboratory at King’s College London (and an early signatory of Declan’s petition to the UN on therapeutic cloning), said UK researchers had overcome fierce opposition by being at the front of the national debate over legislation governing human stem cell research.

Having been passed into law on 13 November, the updated Human Fertilisation and Embryology Bill expands the existing regulatory framework to include, among other provisions, four new types of human-animal hybrid embryos. Hybrid embryos are created by inserting the nuclei of a human cell into an empty animal egg. They are a tool for generating disease-specific embryonic stem cells without the need to use donated human eggs; the cells will not be used in patients, but be used to model diseases in the lab, test new therapies and study cloning processes. Human-animal embryo research can ensure a more plentiful supply of stem cells for use in research into treating conditions like Alzheimer’s and Parkinson’s.

Speaking in Barcelona, Lord Norman Warner, a former health minister in the UK government, recalled denunciations from the nation’s pulpits and said the bill’s final stages were delayed to avoid upsetting Catholic voters before a series of important by-elections. Nevertheless, he said, a clear majority of the public – once they were aware of the bill’s aims – backed the government against attacks by organised religion and what he called “dialogues of the deaf”. An open letter to the government supporting the bill was signed by representatives of 223 medical organisations and charities. “They were quite happy to meddle with nature because they weren’t happy about what nature was doing to afflict those near and dear to them,” Warner said (Nelson, Nature Reports Stem Cells, 2/10).

In the US, stem-cell researchers are calling for changes to state laws that prohibit compensating women who donate eggs for research. The biggest complaints have come in California, where voters in 2004 approved $3 billion to fund stem cell research, said the American Medical News. Limits on compensation are making it hard to find women willing to undergo the time-consuming, often painful process of egg donation, which involves taking a regimen of hormone shots to stimulate oocyte (egg) production for surgical retrieval, said Samuel Wood, who is CEO of Stemagen, a private embryonic stem cell research firm in La Jolla, California. “Why would a woman take 40 injections and go through everything else involved in oocyte donation in exchange for bus fare?” Wood asked. “It’s wrong to ask women to go through this process and not pay.”

California and Massachusetts outlaw egg donor compensation that goes beyond reimbursement for direct expenses such as travel costs and lost wages. The National Academies of Science adopted similar ethical guidelines in 2005. The restrictions are justified, supporters say, because big-money payouts could induce women unduly into taking risks they otherwise would avoid. But these restrictive payment rules stand in stark contrast to the practice in fertility clinics, where the national average payment to egg donors is $4,217, according to a survey published in the May 2007 Fertility and Sterility. The American Society of Reproductive Medicine says payments of more than $10,000 are inappropriate, but highly educated and therefore highly prized egg donors have sometimes been paid much more. Clinical research subjects are usually compensated for the risks and discomfort associated with invasive procedures such as bronchoscopy or endoscopy (O'Reilly, American Medical News, 15/9).

As I wrote in the blog of 26 November “Therapeutic cloning offers hope of treatment for Parkinson’s”, a chief objective of our campaign in support of therapeutic cloning, also known as somatic cell nuclear transfer (SCNT), is to propagate the call of leading experts for a relaxation of rules restricting the compensation of egg donors to boost the supply of human eggs needed for nuclear transfer. I am currently Googling a leading bioethicist, Insoo Hyun of Case Western Reserve University, Ohio. Hyun has called for women to be paid to donate eggs for stem cell research on the same basis that research participants are compensated for taking part in other medical research. In a Nature commentary Hyun argues that “compensation offers a reasonable way to acknowledge women’s efforts by rightly embracing oocyte providers as healthy research volunteers”.