The Difficult Gift: Pamela Madsen's Struggle to Donate Her Embryos Continues

One year ago, I called Pamela Madsen, a well-known advocate in the fertility world, to interview her about the fate of some 400,000 frozen embryos stored in clinics across the country. My goal was to get her professional take on what has become, over the years, a highly charged moral and political debate. But the conversation quickly became personal. Madsen told me that she and her husband had conceived their two sons, now 17 and 21, through in vitro fertilization and that they still had four leftover embryos on ice. For years, she had talked openly about her desire to donate the embryos to stem-cell research, but for a whole host of reasons—personal, practical, political—she hadn't made a move. My call, as she blogged this past January, was the trigger: "When Claudia called—I knew it was a sign—I would have accountability—I would have to go through with each awful step—and I would have to sign the papers."

Madsen invited me along on a journey that was filled with humor, tears, and twists. My story detailed her hunt for the embryos (did Mount Sinai Medical Center, where the embryos were created years back, still have them?) and the decision she ultimately made with her husband to donate them to the Harvard Stem Cell Institute.

Now, a new development. This week, Madsen writes, Harvard called and told her there was a glitch in the paperwork, and the embryos were being shipped back to storage. The problem? The doctors who treated Madsen left the Mount Sinai practice, and the current lab director, who wasn't there when Madsen was a patient, cannot attest to the fact that the embryos belong to her and her husband, and not her and a sperm donor. Getting consent to donate from both parties is critical—people need to sign off on the fate of their embryos—but it's become an unfortunate sticking point for the Madsens. The donation process was enough of an emotional ordeal; now Madsen's embryos are back in limbo and she is devastated. After the call, she says, "I sat in traffic and cried."

Madsen's personal story speaks to facets of embryo donation that are vastly underappreciated. First, few scientists actually work with embryos, the raw material for embryonic-stem-cell lines. For one thing, the arduous process of creating lines takes a lot of skill. But there is also the critical issue of funding: despite President Obama's reversal of Bush-era barriers to government-funded embryonic-stem-cell research last year, a federal law against embryo destruction still stands. Which is why most embryonic-stem-cell researchers work with lines that have already been created, not with the embryos themselves.

The result: despite all the talk about donating embryos to science, it is not easy to do. There aren't many research centers to donate to. And those institutions that do want them have specific criteria about what they will or won't accept, including limits on embryos' shelf lives. Some groups don't have enough money to actively recruit embryos, which cost hundreds of dollars to ship in specially cooled tanks; others already have enough stocked up. If you live in certain states, like Louisiana, you've got another problem: your local law prohibits embryo research altogether.

The most overlooked challenge of all, however, is coming to terms with what an embryo represents—a cluster of cells? Life? The potential for life?—and what should happen to it when baby-making is over. This is a very personal decision. Many couples feel too attached to their embryos to dispose of them or donate them, so they pay their annual fees and leave them in storage indefinitely. Some of those who do want to send them to science are overwhelmed by the process and the paperwork, so they give up. But they live with an unsettled and ongoing concern: what should we do?

The infertility business has been hugely successful in getting patients through the front door, but they're on their own when they exit. Clinics should deem it their responsibility to educate patients on precisely what will happen to their unused embryos, what their options are in terms of storage, disposal, or donation, and—most important—how complicated and messy the process can be. Having a family is a gift; agonizing over frozen embryos is not.