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."
The study also revealed another side to some patients' selfless motivations to participate in research as they might relate to 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."
The authors also note that the unique characteristics of their small study could have influenced the results; for instance, the fact that it was conducted in Baltimore, Maryland, among patients who have received care at Johns Hopkins, where the first immortal cell line was created from tumor cells taken from Henrietta Lacks, put related issues at the forefront of many focus groups. "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," the report states.
Additionally, the report indicates that the opinions that were expressed by patients may be influenced by their health, and whether or not they have personal experience with a debilitating illness, as some of the participants did.
"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
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Johns Hopkins Medicine