Although induced pluripotent stem cells (iPSCs) are derived without destroying a human embryo, and thereby avoid the most contentious issue besetting stem cell research, they still raise ethical concerns. When asked to voice these concerns, patients raise points about privacy, transparency, consent, the “immortalization” of cell lines, and the commercialization of stem cells. Nonetheless, patients also give iPSC research “broad endorsement,” according to a team of bioethicists at Johns Hopkins University.
These bioethics specialists convened several focus groups among patients who had received treatment at Johns Hopkins. These patients indicated that they were largely in favor of participating in iPSC research, even if personal benefit was unlikely. At the same time, however, many participants revealed that they had strong feelings about the ways stem cell research might be conducted, and the uses stem cell research might serve. Patients even suggested that they would weigh these issues when considering whether to participate in stem cell research.
These results were detailed January 2 in the journal Cell Stem Cell, in an article entitled “Patients’ Attitudes toward the Donation of Biological Materials for the Derivation of Induced Pluripotent Stem Cells.” The article highlights the importance that patients place on prior informed consent.
Consent was highly important for patients in all five of the focus groups that were convened. Some patients even suggested that proper informed consent could compensate for other concerns.
There was a “strong desire among participants to have full disclosure of the anticipated uses,” the report notes, with some participants wanting to be able to veto certain uses of their cells. The authors acknowledge the “practical difficulties” of this request but hope that their findings will “prompt investigation into creative approaches to meeting these desires.”
When exploring attitudes toward donating biological materials for iPSC research, the bioethicists found that patients hoped that their selfless motivations would somehow survive the research’s eventual commercialization. The report quotes one participant as saying, “It won’t be just taken to become a money maker and the very people who need it the most will no longer be able to benefit from it” and another, “…it was a donation. It’s a humanitarian effort.”
By appreciating the thoughts and sentiments of potential study participants, noted the report, researchers may be better equipped to develop policies for “consent, collection, and use of biological materials for deriving iPSCs.” According to Jeremy Sugarman, the senior author of the report and the Harvey M. Meyerhoff Professor of Bioethics and Medicine at the Johns Hopkins Berman Institute of Bioethics, “Bioethicists, as well as stem cell researchers and policy-makers, have discussed the ethical issues of induced pluripotent stem cells at length, but we didn’t have any systematic information about what patients think about these issues.” Patients’ views, emphasized Sugarman, are “a huge part of the equation if the potential of this research is to be fully realized.”
For more on iPSCs, be sure to check out “Commercializing iPSCs: A Quantitative Snapshot.”