January 3, 2014
Public Opinion Generally Supports Stem Cell Research
Rebekah Eliason for redOrbit.com – Your Universe Online
Early reports indicate that lay opinions regarding stem cell research with stem cells made from skin or other tissues, known as induced pluripotent stem cells (iPSCs), are generally positive, despite several ethical concerns.Regardless of personal benefit, most patients indicated during focus group discussions that they would be will to participate in iPSC. When considering donating tissue, patients raised concern regarding consent, privacy and transparency. Jeremy Sugarman, senior author and the Harvey M. Meyerhoff Professor of Bioethics and Medicine at the John Hopkins Berman Institute of Bioethics, said, “"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, and that is a huge part of the equation if the potential of this research is to be fully realized.”
Somewhat taking the edge off of the controversy is the fact that iPSCs do not require the destruction of a human embryo. Using iPSCs in research is extremely valuable in the development of new drugs, disease study and may help develop medical treatments. Although still far off, Sugarman explained that there is hope that iPSCs could eventually be used in the development of organs for transplantation that the body’s immune system will not attack since they can be formed from the person’s own cells.
In all five of the focus groups, consent for iPSC research by the patient was highly important. Several of the patients believed that properly informed consent could alleviate other concerns about privacy, the 'immortalization' of cells, and the commercialization of stem cells.
The report noted a “strong desire among participants to have full disclosure of the anticipated uses.” Some of the participants expressed a desire to be able to veto some of the uses of their cells. Although the authors recognize the “practical difficulties” of this request, they hope their study will help to “prompt investigation into creative approaches to meeting these desires.”
The study exposed an additional side to some patient’s selfless motivations in research participation in relation to eventual commercialization. One participant from the report is quoted 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.”
Unique characteristics of the small study that could influence results were noted by the authors. For example, since the study was conducted in Baltimore, Maryland with patients who have received care at Johns Hopkins, which is home to the first immortal cell line produced from tumor cells that were taken from cancer patient Henrietta Lacks in 1951, related stem cell issues are at the forefront of various focus groups. The report stated, “The idea that donated cells would potentially live forever was unnerving to some participants. In particular, the story about the creation of the HeLa cell line from Henrietta Lacks' cervical cancer tissue, taken without consent, was raised in four out of the five focus groups.”
In addition, the report suggested that a patient’s opinion may be affected by their own health and whether they had any personal experience with a debilitating illness. “It seems fair to say that everyone experiences serious illness in their lives, whether themselves or through someone they know and care about, and this influences their opinions of healthcare and research,” Sugarman says. “This study is a first step in getting crucial information about what values are factored into a decision to participate in iPSC research, and what those participants expect from the experience.” This study was reported in the journal Stem Cells.