About oneself or of groups and the possibility of better matches

About oneself or of groups and the possibility of better matches for tissue donation. Others, however, felt completely uncomfortable with anyone accessing information they considered SC144 site off-limits, even if this information could provide potential benefits for the participant or their family. Immortalization of Cell Lines–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, participants worried about whether or not researchers would adhere to the terms of signed consent forms. Similarly, some feared that it would be hard to control what cells were used for in the future: I would be wondering if you can keep them alive for a very, very long time. What other things could you do with them even if I signed a million papers saying that you’re not supposed to do this and that and whatever, whatever. The potential for that to go wrong is, you know… I’d be very nervous… other uses that are against what I believe or just–what I would consider evil, or whatever. Yeah, I’d have an issue with that. Big issue.Author Manuscript Author Manuscript Author Manuscript Author ManuscriptCell Stem Cell. Author manuscript; available in PMC 2016 February 01.Dasgupta et al.PageConcerns over immortalization were not only focused on potential inappropriate uses of the cells, but also on who may profit from the cell lines if they did eventually lead to therapies. Commercialization–Commercialization was one of the more nuanced concerns that surfaced in the focus groups. Participants struggled with who should be compensated for providing tissues and how any resulting profits from the commercialization of research should be distributed. As with discussions concerning the immortalization of cell lines, participants occasionally explained ethical issues of commercialization with reference to HeLa cells. What if they’re immortal? That’s potentially a problem for me, because I’m not immortal. So by definition someone has use, ownership and usage, and access to those cells after I’m gone. And what comes to mind–I hate to bring this up in this institution [Johns Hopkins]–are HeLa cells. And how they were attained, and then there was–from a person, and how they were used, and are being used commercially. And that person obviously didn’t give consent. She’s not getting reimbursed. Her family and her descendants are not getting reimbursed from it. So I like the idea, in theory, but as far as in the real world, especially since we live in a commercial society, I have great problems with it. Similar concerns extended to the distribution of commercialized therapies, as well. One participant cautioned that, “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.” Participants generally accepted the need for intellectual property rights and profits for discoveries, but disagreed about compensation for those whose tissues have commercial value or are used in research with commercial value. For example, one participant explained: I don’t believe that the people should profit from any hard earned research. They put all of the ground work into building this thing up. Even though it is coming from you, it was a donation. It’s a PM01183 supplement humanitarian effort. However, not all expr.About oneself or of groups and the possibility of better matches for tissue donation. Others, however, felt completely uncomfortable with anyone accessing information they considered off-limits, even if this information could provide potential benefits for the participant or their family. Immortalization of Cell Lines–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, participants worried about whether or not researchers would adhere to the terms of signed consent forms. Similarly, some feared that it would be hard to control what cells were used for in the future: I would be wondering if you can keep them alive for a very, very long time. What other things could you do with them even if I signed a million papers saying that you’re not supposed to do this and that and whatever, whatever. The potential for that to go wrong is, you know… I’d be very nervous… other uses that are against what I believe or just–what I would consider evil, or whatever. Yeah, I’d have an issue with that. Big issue.Author Manuscript Author Manuscript Author Manuscript Author ManuscriptCell Stem Cell. Author manuscript; available in PMC 2016 February 01.Dasgupta et al.PageConcerns over immortalization were not only focused on potential inappropriate uses of the cells, but also on who may profit from the cell lines if they did eventually lead to therapies. Commercialization–Commercialization was one of the more nuanced concerns that surfaced in the focus groups. Participants struggled with who should be compensated for providing tissues and how any resulting profits from the commercialization of research should be distributed. As with discussions concerning the immortalization of cell lines, participants occasionally explained ethical issues of commercialization with reference to HeLa cells. What if they’re immortal? That’s potentially a problem for me, because I’m not immortal. So by definition someone has use, ownership and usage, and access to those cells after I’m gone. And what comes to mind–I hate to bring this up in this institution [Johns Hopkins]–are HeLa cells. And how they were attained, and then there was–from a person, and how they were used, and are being used commercially. And that person obviously didn’t give consent. She’s not getting reimbursed. Her family and her descendants are not getting reimbursed from it. So I like the idea, in theory, but as far as in the real world, especially since we live in a commercial society, I have great problems with it. Similar concerns extended to the distribution of commercialized therapies, as well. One participant cautioned that, “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.” Participants generally accepted the need for intellectual property rights and profits for discoveries, but disagreed about compensation for those whose tissues have commercial value or are used in research with commercial value. For example, one participant explained: I don’t believe that the people should profit from any hard earned research. They put all of the ground work into building this thing up. Even though it is coming from you, it was a donation. It’s a humanitarian effort. However, not all expr.