The Niche

Form work: how to make decisions with embryos and cell lines

The New York Times has a story out today about highlighting a study that shows that couples who have embryos in storage generally don’t want them to become someone else’s children.

Last year, the lead researcher of this work, published results in Science that surveyed couples who were undergoing fertility treatments and found that 49% of over 1000 couples with stored embryos said they would donate embryos for medical research. Interestingly 60% were willing if a purpose of research, like making stem cells, was given. (See Survey: US couples willing to donate embryos) The lastest publication is in Fertility and Sterility and is summarized in a press release from Duke.

Meanwhile, Geoff Lomax at CIRM told me the Institute is working out a mechanism to figure out if various embryonic stem cell lines as well as induced pluripotent stem cell lines have been acceptably derived. In short, officials there are preparing a very, very carefully thought out registration form about how a line was derived so that CIRM (and presumably other states) can decide that it can be used in research. There are check boxes for whether and how informed consent was obtained for gametes, embryos, and tissue, as well as whether donors received any sort of payment. The goal of a single, simple form is to take some of the paperwork and guesswork out of deciding what lines researchers can use in experiments. (Lomax said he’s happy to read suggestions sent to Glomax[at]cirm.ca.gov; please send them in by Friday, December 12th; this Fri.)

A related discussion(free after registration) is underway in response to an article by University of Wisconsin-Madison bioethicist Robert Streiffer, which made headlines (subscription) for his analysis that some lines on the NIH Stem Cell Registry (those that the President declared eligible for federal funding) were obtained without informed consent.

This kind of work Lomax is doing reminds me of what Streiffer told me when I interviewed him months ago: it’s not just science that advances in response to experience, so do standards of informed consent. (See When the past catches up with the present for reaction to worries that the NIH did not properly evaluate informed consent.)

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