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.
