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In support of science

Hoping to aid research, donors meet with piles of paperwork -- and takers can be elusive.

October 06, 2008|Shari Roan | Times Staff Writer

CHRIS AND TANYA Bailey of Mission Viejo have a 3-year-old and triplet toddlers, all conceived through in vitro fertilization. After the birth of the triplets, they had 13 embryos left over in cryopreservation.

The idea of discarding them made the couple uneasy.

"I thought of them as potential life, but I don't think of them as children," says Chris Bailey. "They are definitely more than sperm and egg."

After much discussion, the couple decided to donate the embryos to research.

"We felt we were so lucky that research had been done and [that it] gave us the opportunity to have children," says Tanya Bailey. "So why not give our embryos to research as well to help somebody else out?"

The decision to donate to research, says Chris Bailey, "was a logical choice."

Even after grappling with the decision, however, many people find that donating to research is easier said than done. People wishing to donate to research must complete detailed paperwork and may even be asked to select the type of medical research for which they want their donation used. Others find they cannot proceed with their donation if they used egg and sperm donors who would not consent to the donation. Still others simply can't find a medical research organization to accept their donation.

For Californians, at least, donating unused embryos to research has become somewhat easier in the last two years. The launch of the state's stem cell research program and the opening of a dedicated tissue bank at UC San Francisco has opened at least one clear path for donation by providing a place for families to send their embryos where they will be available to researchers.

"As stem cell research moves forward and viable treatments emerge, there will be a greater demand for the use of frozen embryos," says Lois Uttley, director of the MergerWatch Project, a patients' rights organization based in New York City. "That could raise the profile of this issue."

The few states that fund stem cell research are more likely to be able to connect donating families to specific research programs that need embryos. People in other states do not have a clear pathway to donation, says R. Alta Charo, a professor of law and bioethics at the University of Wisconsin at Madison. "Most IVF clinics are not hooked up to a research team and they may not be able to refer couples to a clinic who can do it for them," she says.


Research options

At the UC San Francisco IVF Tissue Bank, which opened in 2005, couples have some choices as to the type of research they will be assisting. In cases where families donate to a specific research program, they often do not have the ability to specify the kind of research they wish to support.

There, however, Level 1 allows donated tissue to be studied but doesn't allow for the creation of stem cell lines. Level 2 allows all Level 1 research and the creation of a stem cell line. Level 3 allows Levels 1 and 2 research and, in addition, allows tissue to be used for stem cell nuclear transfer, which is also known as therapeutic cloning. In this type of research, stem cells are extracted from the embryo and are allowed to grow into a piece of tissue or organ, but never a human being.

Individuals who donate do not incur any costs, but they should be prepared to spend a lot of time on paperwork, says Denise Bernstein, coordinator of the bank. The packet sent to donors from UCSF contains pages of information as well as numerous forms, some of which must be notarized. In addition, the tissue bank conducts a telephone interview with the donors. The process' goal is to fully inform the donor or donors and to gather information scientists may need for their research.

"Some people say, 'You know what? It's easier to discard them,' " Bernstein says. "They have to be motivated to want to do this."

Though the UCSF bank's paperwork may be especially laborious because of the options for stem cell research, most research groups have a detailed consent process, says Dr. David Diaz, an infertility doctor with offices in Fullerton and Fountain Valley.

"The bureaucracy can be overwhelming." In his clinic, says Diaz, fewer than 1% of patients with frozen embryos have donated to research over the last three years.

And a sizable number of potential donors are turned away because of consent questions.

People who used donor eggs or donor sperm to create their embryos must obtain the consent of those donors before embryos can be released to researchers -- something that may be impossible if the gametes (eggs or sperm) were donated long ago, especially if anonymous donors were used. About 15% of all IVF cycles involve donor eggs.

Egg and sperm donors may also be asked to provide some personal health information. Researchers often want to know about the donor's personal and family medical history. Donors may be asked if they can be contacted in the future if the research yields information that could be useful to them or to see if any health changes have occurred since the donation.

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