A group of people suffering from Parkinson's disease agreed several years ago to participate in a new study in San Diego. Researchers want to see if it is possible to transform the patient's own skin sales into neurons the disease has destroyed and reintroduce the cells into the brain. It is a revolutionary concept and patient advocates have been actively involved in fundraising. No problem with that, right? There could be. The idea of patients raising money for research that might and if it them is opening up some complicated issues. They will be discussed tonight at 5:30 PM in Balboa Park. Joining me today is Jeanne Loring center for regenerative medicine at the Scripps research Institute. Welcome. ________________________________________ Thank you. ________________________________________ Mary Deveraux no -- assistant director you see as the research ethics program welcome. ________________________________________ Thank you. ________________________________________ This is taking place at your lab. Why is your dinner -- research different from other research? ________________________________________ The original studies that drive our work and sit just we be successful use fetal tissue. That went back to the 90s but there are still people doing that. People have been cured of their disease by getting transplants of fetal tissue. That's the history. The reason we're doing it this particular way is because it is the way that makes the most sense to us and is going to have the least amount of impact on the patient's. If we use the patient's own cells, but we transplants into their brains, they won't be rejected. ________________________________________ Gene, patients and advocates have been raising money by crowdfunding and other means to make sure you have enough funds to continue. How crucial is that fundraising been? ________________________________________ That is the only source of funds we have for this project. ________________________________________ How much more do you need? ________________________________________ About $7 million to get it to the clinic. ________________________________________ Can you tell us why it's the only source of funds? ________________________________________ This is cutting edge. One thing is that companies will not pay for it. When you have a therapy and develop it and get it to the clinic, it is usually a company that does it. That is considered too risky in this case. It makes sense to me. We should take the rest, the academics should take the risk. ________________________________________ These patients are doing a great thing, they are being proactive, they are working to help themselves. What is wrong with that? ________________________________________ In one sense nothing is wrong with that. In some ways with these patients are doing is what families with a history of breast cancer or a history of some other disorder have done. You might get involved as an advocate or in fundraising for breast cancer or the American Cancer Society. What is different in this case, this particular group of patients have set up their own foundation to raise money for a particular lab, that is for Dr. Loring's lab and this particular approach the cause they are put excited about this particular approach. I take it for them some the other available treatments have not worked. ________________________________________ One of the questions that I understand is raised by this, one of the concerns, is that patients who have the time, the wherewithal and the education to get behind the project like this might overwhelm the needs of less privileged people. Is that what your concerns? ________________________________________ Yes. Absolutely. There are two concerns in this particular field. One is about people getting themselves organized and perhaps going to a clinic that is not rigorously scientific, where you have a medical tourism, where people will go and pay out of pocket for things that are not established the FDA or usual mechanisms. That is not what is happening here. What is happening is that people have set up a foundation for this particular disease. I think that in the context of what we typically do for this stage of research, which is to go to the federal agencies like the national Institute of health for the funding. You're right, what we have here are highly educated and highly articulate people who are doing this for a particular disease. There are concerns from an ethics point of view about justice. For example, people or families of people with quite rare conditions might be left out of this kind of mechanism, although the federal agencies do have special fundraising for those sorts of groups. There are all sorts of diseases that only appear in much poorer part of the world. Things like malaria, where you're not going to get this kind of attention and crowd sourced funding. ________________________________________ What other issues regarding crowdfunding in research do you think you will be discussing tonight? ________________________________________ There is a question whether this model were adopted on it broader basis, with the implications might be in terms of federal funding for scientific and medical research. We already have some sectors of the population who are not in favor of 70 -- significant budget for scientific research, even for medical research, which one might think of as the most easily accepted from an ethical practical and immediate point of view. If the idea is that we can move this research funding into the market, there might be no need for government support for such funding. I think that would be a very bad outcome both from a policy point of view and an ethics point of view. ________________________________________ I have been speaking with Jeanne Loring, center for regenerative medicine at the Scripps research and the two and Mary Devon were -- Deveraux assistant director of UCSD research ethics program.
The use of stem cells in scientific research has been the subject of ethical debate for decades, with scientists often destroying an embryo to obtain the regenerative cells. But another avenue for stem cell research, developed in San Diego, doesn’t involve embryos at all, though it has set off its own series of ethical questions.
The Center for Ethics in Science and Technology is hosting a forum Wednesday at the Reuben H. Fleet Science Center in Balboa Park to discuss the ethical implications of using crowdfunding to launch clinical research.
Jeanne Loring, director of the Center for Regenerative Medicine at the Scripps Research Institute, has developed a method to transform Parkinson’s patients own skill cells into neurons that the disease has destroyed. Loring’s research has raised more than $2 million since 2010, but it hasn’t come from the usual government grants or industry funding. It has come from a non-profit, Summit for Stem Cell, which has crowdfunded the money from donors around the world.
“This is cutting edge, so one thing is companies will not pay for it,” Loring said. She added that it’s hard to launch research based on new ideas with government grants because scientists need data for a strong application.
While crowdfunding campaigns can concentrate resources that are unavailable through traditional means, bioethicist Mary Deveraux said scientists must be careful not to allow research funding to be driven by the highest bidder. Deveraux, assistant director of the UCSD Research Ethics Program, doesn’t take issue with any of Loring’s research, but said there is a potential concern about funding driven by the wealthy and well-educated overwhelming the needs of less privileged patients.
“What we have here are highly educated, highly articulate people who are doing this for a particular disease,” Deveraux said. “There are concerns from an ethics point of view about justice. For example, people or families of people with quite rare conditions, what are often called orphan diseases, might be left out of this kind of mechanism.”
Loring and Deveraux will discuss Loring’s work at the Center for Ethics event. They both join KPBS Midday Edition Wednesday with more on the evolving nature of science funding.
