Stem cells will fight rare blood disorder but ethics under fire

The nation's first "designer" test-tube babies, who will help their seriously ill sisters with stem cell transplants, have been born amid ethical concerns in the medical profession and among the public over the procedure.

A 38-year-old woman, identified only as Ma from Conghua, Guangdong province, gave birth on June 29 to a healthy baby girl conceived by in-vitro fertilization, according to an announcement from the First Affiliated Hospital at Sun Yat-sen University in Guangzhou.

The birth of Boxi rekindled hopes of curing her ill sister, who suff ers from a rare blood disease. [Photo by Guan Qi / For China Daily]

"I'm excited about the birth of Boxi (the baby's name)," said Ma, whose 14-year-old daughter has beta-thalassemia, a hereditary blood disorder. "It's worth all the time, money and pain to save my daughter."

An earlier birth in March by a 35-year-old woman, surnamed Gan from Zhanjiang, also in Guangdong province, provided hope for her daughter, 6, who also suffers from beta-thalassemia.

Conception was achieved with the aid of the hospital and the babies became the country's first "designer babies" with the matched antigen to boost the production of human leukocyte, white blood cells.

According to Zhou Canquan, director of the hospital's obstetrics and gynecology department, umbilical cord blood stem cell transplants and, if needed, bone marrow transplants, are the only radical cure for the disease affecting Ma and Gan's daughters.

An online survey by China Daily and Sohu, a website, found that nearly 49 percent of 754 respondents opposed the procedure, citing as their main reason that the baby was "tailor-made" as a cure, and they believed this to be unethical.

Another major reason given was that the success of the transplant was not guaranteed and the "designer baby" had no say in the matter.

Ma, however, said that she believed that the baby would be happy to save her sister's life, adding that she is now eager to see her daughter undergo the transplant.

"I know that no surgery is 100 percent safe and sure of success," Ma said. "But I must try to cure my daughter who needs regular blood transfusions."

Ma resorted to IVF at Zhou's hospital in 2010 after three failed attempts to naturally conceive a baby free of genetic blood disorders. She and her husband were told they are both carriers of the virulence gene.

Doctors checked the genes of several embryos created through IVF.

They then filtered out those passing on the parents' genetic disease, and chose the ones whose antigens matched those of the sick sister.

Next, the selected embryos were placed into the mother's womb. Immediately after birth the umbilical cord blood was collected and saved for future stem cell transplantation.

"Conducting this type of antigen typing enables couples carrying the beta-thalassemia virulence gene to have a baby. Not only a healthy baby but one also able to save the life of their other child," Zhou said. Therefore, "experts around the world tend to call such test-tube babies 'therapeutic'".

Professor Wang Lina at Peking University Third Hospital's center of reproductive medicine, however, pointed out that the procedure was controversial, especially because there was a lack of legislation covering it and it could be abused.

"Our hospital will not carry it out at least until health authorities issue the relative rules and regulations," she said.

Qiu Renzong, a leading bioethicist with the Chinese Academy of Social Sciences, had a different opinion."This is just a regular clinical practice and does no harm to anyone. So why not support it. It can help save lives," he said.

The service is only offered to particular parents, Zhou said.

"We offer the pre-implantation genetic diagnosis (PGD) service, including human leukocyte antigen typing, only to parents of a child who needs stem cell or bone marrow transplants and they should be legally allowed to have a second baby."

Ma got permission in 2008 from family planning authorities to have a second child.

The ethics committee of the hospital can supervise and veto the procedure to prevent possible abuse, Zhou said.

However, he conceded that risks, including possible side effects to the mother during the process and potential health problems for the test-tube baby, did exist.

The process of including human leukocyte antigen typing was first applied in 2001.

While in China the main ethical controversy about PGD is the risk of being misused to select a baby's sex, the main ethical controversy overseas is that it is unfair to those unselected embryos.

"Some think that we are changing an embryo's genes to make it fit in a design. However, we are not designing but just selecting an embryo that is healthy and also able to cure a person in need," Zhou explained.

There is a very slim chance, about 1.7 out of 100,000, of someone finding suitable stem cells for human leukocyte antigen from an unrelated person, experts said.

"And it is a long and tortuous process for the mother. She has to go through all kinds of body checks, take drugs and injections to get a qualified embryo," said Ma, who waited for three months to conceive the baby and failed two times before to get the suitable embryo.

Unlike Ma, Gan in Zhanjiang said she would try to hide from both her daughters the fact that her second daughter was a test-tube baby and gave stem cells to her sister.

"I will treat both of them equally well. I won't tell them when they grow up," she said.

Contact the writers at xujingxi@chinadaily.com.cn and shanjuan@chinadaily.com.cn