Stem cell research on donor eggs often not disclosed

(Reuters Health) - Many U.S. fertility clinics don't tell egg donors that embryos made from their eggs may end up being used in stem cell research, according to a new government survey.

That's despite widespread opposition to such research, which is considered morally offensive by a third of Americans, researchers write in the journal Fertility and Sterility.

They found that among 100 fertility clinics, two said they didn't have a consent form for women donating eggs.

Of the 66 clinics that sent in a consent form and said they used excess embryos for research, just 20 told women about that. And only three of 38 clinics that used some embryos for stem cell research in particular disclosed that to donors.

"The survey shows that only a minority of IVF (in vitro fertilization) clinics mention to egg donors who are donating for the sake of treatment (as opposed to research) that resultant embryos might ultimately be used in research," said study co-author Gerald Owen Schaefer of the National Institutes of Health in Bethesda, Maryland. "An even smaller minority mention stem cell research explicitly."

"Since possible research use of embryos, especially for stem cell research, may be material information affecting some women's decision about donation, egg donors should be so informed," he and his colleagues wrote in the paper.

Some women have eggs taken out as part of their own fertility treatment, while others receive handsome payments -- often several thousand dollars -- to donate an egg.

"We recommend that all IVF clinics that provide some embryos for research inform egg donors about the possibility of such research (including stem cell research, which is particularly controversial)," Schaefer told Reuters Health by email. That agrees with several organizations such as the National Academy of Sciences and the International Society for Stem Cell Research.

Bioethicists not involved in the new study questioned whether disclosing that surplus embryos might be used for research would have an effect on women's decision to donate.

"I think it's unlikely that this would have an impact on women who are engaged in commercial egg donation," said Dr. Steven Miles, a professor of bioethics at the University of Minnesota in Minneapolis. "Whether it should be disclosed is another issue -- in general, disclosure is a good thing."

Raymond De Vries, a social scientist and a professor of bioethics at the University of Michigan Medical School in Ann Arbor, said the survey left crucial questions unanswered.

"Clearly it is important for women to know where their eggs are going. But we don't know from this survey, are women upset by this?" he told Reuters Health. "What is missing is, these women who donate eggs, what do you know about them?"

De Vries said there are examples of ads luring in potential donors with compensations upward of $10,000, although harvesting an egg is not a straightforward procedure.

"Getting an egg out of a woman is not like going to the chicken coop and getting an egg," he said. "It is not a completely risk-free endeavor."

Yet, there is no federal regulation of IVF clinics in the U.S., according to De Vries.

"It's cowboy land out there," he said.

Published in : reuters

SOURCE: bit.ly/sqdomr Fertility and Sterility, online December 23, 2011.

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Cloning in Korea

The recent past of Korea’s cloning research is best described as dubious. Disgraced Seoul University professor Hwang Woo-suk claimed in 2004 to have cloned human embryos and developed stem-cell lines, but most of that work was exposed as fraud in 2005. Now another scientist, Park Se-pill, of Jeju National University, is aiming to clone human embryonic stem cells by 2015, a breakthrough that scientists still have not yet achieved. The embryologist wants to begin cloning human embryos and building stem-cell lines from them from the start of next year.

“Recently, the government approved Cheju National University as eligible to conduct human embryonic studies. We now need to get separate okays for specific research projects,” Park said. “We will be able to start the work on human embryonic stem cells next year with the aim of finishing them by 2015. It will be tough as nobody has achieved it yet but we will do our best.” 

“In fact, things are much difficult now compared to when Hwang carried out his research because we are now not allowed to use fresh eggs to duplicate embryos,” Park said. “Instead, we have to depend on frozen eggs so that the success rate will be very low as amply demonstrated in animal experiments. We need to fix this problem.” (Thanks to Mary Meets Dolly for the reference.) 

~Korea Times, Nov 16

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Many surrogate children end up in legal limbo

In a story that contrasts with the optimistic surrogacy story in BioEdge last week, at least 15 children born to Irish couples who used overseas surrogates are stuck in a legal limbo. They are either stateless or unable to get an Irish passport. This conflicts with recommendations by the Commission on Assisted Human Reproduction, founded over a decade ago, which urged the government to regulate surrogacy. Many parents say the delays in resolving the legal status of their children cause them continual stress and are likely to require legal action.

One couple from Dublin in their 30s have been stuck overseas in India for several weeks. One of the parents, who chose to be unnamed, said: “We are tired and angry with the Irish authorities.” A 43-year-old man who had a child using a surrogate mother last year had to use his British citizenship to bring his son to his home country via Northern Ireland. “My child was stuck in India for five months in the end. I feel I was treated terribly,” he said.

Officials at the Irish Passport Office and the Department of Foreign Affairs say they must work within the law, which exists to protect children. “The passport is not a magic bullet – parents need to establish citizenship and guardianship for the welfare of the child. When that is established, that’s where we come in and issue a passport,” a senior official said. Another Dublin couple had a child via a surrogate in India, but their child’s status has not been regularised and she therefore remains stateless.

Reference : BioEdge

Irish Times, Nov 19

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Cancer patient hunts biological father

Fourteen years after being told she was conceived with the help of a sperm donor, a woman recently diagnosed with advanced cancer is determined to find the man who could shed light on her genetic and medical history.

Both her parents were born in Malta, so the clinic matched the blood group and Maltese origins when selecting the donor.Born in Australia, Narelle Grech, 29, from Melbourne, is one of hundreds of Australians searching for their biological relatives. But since she was born before 1988, she has no legal right of access to her biological father’s details.

Doctors suspect the cancer is genetically linked and her mother’s family has no history of cancer. Finding her biological father earlier could have meant being screened at an earlier age.

Narelle is aware of her biological father’s details. He donated at Prince Henry’s Hospital (now closed) in Melbourne around 1981. At the time, he was a student and married, had brown hair and eyes and his blood group is O positive.

His donor code T5, given to him at the clinic, shows that his surname begins with the letter T. One of the counsellors who has access to her records told Narelle her father’s surname is recognisably of Maltese origin. But this information is the only lead in her quest to find the man who dwelled in her thoughts for the past years.

“It’s been 14 years and the curiosity has not changed. I still want to find him,” she told The Sunday Times.

Narelle was 15 when her parents told her about her donor conception status.

“As you can imagine first I was shocked, although it wasn’t until years later that I seriously considered what this news meant for me – my identity, my place in my family and in the world.

“I was upset I couldn’t know more, and have since been searching for him with the little information I was given. I still feel at a loss for not being able to know him and my paternal family.”

Initially it was all about finding him and identifying the man who helped create Narelle, but as she got older it became about learning more about herself, her identity and her paternal family. Yet, the law in the state of Victoria means the identity of her biological father is kept under lock and key.

“I am being denied access to information about myself and this is very frustrating. It has broken my heart many times over,” she added.

In May, her search took a more critical turn when doctors diagnosed her with advanced bowel cancer, classified at stage four.

“My prognosis is five years, but I’m hoping to defy the odds,” said Narelle, who is on constant medication.

Identifying her biological father earlier could have meant a chance at beating cancer and a potential lifeline to her eight half siblings, who were conceived by the same donor, and who should also be screened every five years.

“I have been denied the chance to know them and not only may they not know they are donor conceived, they may not know that they are at risk of cancer. This makes me very upset and powerless. Being donor conceived not only effects me, it impacts so many people and needs to be monitored far more rigorously than it is now.”

She said there were still many flaws in the Australian system, forcing people to live a lie and a possible direct breach of the United Nations Conventions on the Rights of the Child, sanctioned by government and legislation.

Asked whether her biological father could still assist her, even if he wanted to remain anonymous, she said it would be useful to know if anyone had been diagnosed with cancer in his family and at what age it emerged.

“This would help me, the other people conceived by his donations and generations to follow – my children, nieces and nephews related by blood,” Narelle said.

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UK IVF clinic destroys donated eggs

A UK couple are distraught after a blunder at IVF Wales in Cardiff. Chris and Lorraine were told over the phone on the evening they returned from IVF Wales in Cardiff that a batch of eggs had been accidentally destroyed. The couple had been trying to have a baby for seven years. Earlier this month, the clinic was slated for mistakenly destroying sperm donated by cancer patients about to be treated.

The error was uncovered by the Human Fertilisation and Embryology Authority, the UK’s fertility watchdog. The HFEA’s report said it was “extremely concerned” by the clinic’s errors this year. Lorraine’s sister donated eggs in February, which were described as “of exceptional quality”. But hours later they were told that they had all been destroyed in a “mechanical error”.

Lawyer Guy Forster said: “It is extraordinary that a clinic can have such a lackadaisical approach to quality and risk management but it is perhaps even more concerning that this has been allowed to carry on despite numerous serious incidents.

“Although the clinic must take its share of the blame for the catalogue of errors in recent years, I am greatly concerned that the HFEA - which as the official regulator exists both to police the industry and ensure best practice - appears to have been largely ineffective in reducing rudimentary errors and improving standards at this particular clinic.” 

Sources : BioEdge

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