New York State – Take action

This morning Declan thought it best if we left the Catholic Manna Centre at 9.00am, without even a bit to eat; only the third time we have done so since we learnt about the place back last Easter, and the second time in a week (see blog of 21 January “Violence and economic strangulation”). Declan continues to wash in the street, which he has been doing since 10 April last year as a result of all the harassment he has received from other homeless: see, for example, blog of 16 May 2008 “More racially aggravated harassment in the Dellow Centre”; or blog of 18 June 2008 “Declan robbed in the Sisters of Mercy Dellow Centre”; or blog of 19 June 2008 “Declan assaulted in the Manna Centre”. Oh, and on 18 June 2007 we were barred from the Methodist Church Whitechapel Mission by the minister’s wife due to concerns about our safety, after I was assaulted in an unprovoked attack by a homeless woman in the canteen (see here). Declan has written on several occasions to the head of the Catholic Church in England and Wales, Cardinal Cormac Murphy-O'Connor, in his capacity as Archbishop of the Diocese of Westminster, to which the Dellow Centre belongs (see blog of 6 November 2008 “Letter to Cardinal Cormac Murphy-O'Connor”).

With respect to the new NAC website in support of embryonic stem cell research and therapeutic cloning (see blog of 19 January “NAC website launched”), this afternoon we finalised our Take action, which is part of New York State under Law and Policy in the USA. We are not the only ones aware that on Monday the ethics committee of New York’s Empire State Stem Cell Board will meet and consider whether payments to women who donate their eggs for stem cell research should be permitted: Jesse Reynolds of the Center for Genetics and Society, a nonprofit public policy organisation based in California, is against and has written an opinion in Newsday.

This is our Take action (Richard Daines is the New York State Health Commissioner and chairs the Empire State Stem Cell Board):

Dear Commissioner Daines

I understand that at the state level the issue of compensation of oocyte (egg) donors is arising in the deliberations of New York’s Empire State Stem Cell Board which was created legislatively in 2007 to provide state funding for stem cell research. In this letter, I urge you and the other members of the Empire State Stem Cell Board Ethics Committee to permit compensation to women who donate their eggs for stem cell research that seeks to use somatic cell nuclear transfer (SCNT) - sometimes referred to as “therapeutic cloning” to distinguish it from reproductive cloning research - to produce embryonic stem cells.

There is no sound, persuasive ethical reasons why New York State funds should not be available to compensate egg donors. This view was endorsed at the Ethics Committee meeting of 22 February 2008 by Dr Henry Greely, who is the Deane F and Kate Edelman Johnson Professor of Law at Stanford University and chairs the California Advisory Committee on Human Embryonic Stem Cell Research. He suggested New York should allow some compensation for gamete donation because it is not unethical for women to receive some compensation for their pain, suffering and time. However, he also recommended establishing some type of limit on the amount of compensation paid to donors.

On 27 June 2008, Dr Catherine Racowsky, Director of the Assisted Reproductive Technology Lab at Brigham and Women’s Hospital in Boston and an Associate Professor of reproductive biology at Harvard Medical School, presented information to the Ethics Committee on the risks of ovarian stimulation, surgical risks, psychological risks, cancer risks, and risks to future fertility. Committee members were advised that Dr Racowsky served on the Institute of Medicine’s Committee on Assessing the Medical Risks of Human Oocyte Donation for Stem Cell Research (IOM Committee) that developed the report by the same name that was distributed to Board members in May.

Dr Racowsky concluded that with appropriate selection and careful monitoring of stimulation, ovarian hyperstimulation syndrome should be preventable in all or almost all egg donors; that the anesthetic and surgery risks are very low; that there are potential psychological risks that can be addressed in most cases with appropriate counselling; and that most cancer studies are reassuring in not showing a strong association between fertility drug use and cancer rates, although some have shown increased risk with greater drug use or when patients have been followed over a longer period of time. In response to questions from Board members, Dr Racowsky stated that she thought egg donors should be compensated, but noted that how that is done is very tricky in light of the potential for undue inducement.

Moreover, Dr Carl Coleman, who is the Director of the Health, Law and Policy Program at Seton Hall Law School and was previously Counsel, and then Executive Director, to the New York State Task Force on Life and the Law, suggested to the members of the Ethics Committee on 4 September 2008 that thinking of an egg donor as a research subject makes sense and that the compensation for research subjects and IVF donors often includes consideration of the time, inconvenience, and discomfort, and in some cases, the risk.

It is important to include in the ethical analysis the potential for good that can come from SCNT. The Coalition for the Advancement of Medical Research (CAMR) is the USA’s leading bipartisan pro-cures coalition. In a report released on 12 January 2009 entitled “A Catalyst for Cures: Embryonic Stem Cell Research”, CAMR states: “Somatic cell nuclear transfer (SCNT) is another example of a technology with promise that has faced unexpected challenges. Oocyte availability, for example, has been problematic. Yet the challenges are worth overcoming. ‘SCNT is the only known procedure for completely and normally reprogramming a cell,’ says John Gearhart, University of Pennsylvania. Because SCNT is more efficient than iPS cell technology for reprogramming cells, and can be done without inserting new genes, continued studies of SCNT could help scientists find the linchpin to make reprogramming factors more efficient and effective. SCNT will also provide fundamental insights into how an egg reprograms that will teach a great deal about basic biology.”

Yours sincerely

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).