Dilemma about philanthropically funded research

May 17 2016 Published by under Uncategorized

Recently a friend of a friend (yes that’s a real person), who apparently is quite wealthy, wanted to donate a substantial sum of money for research in a specific disease. He had been in contact with a major research university and was directed to a given investigator working on this disease and who wrote up a research prospectus of the research and clinical study he was going to use the funds for. My friend knew I was sort of in the field (not really, neuroscience is a BIG field) and asked me what I thought of the research plan. I told him I wasn’t an expert in this and referred him to someone who was, and who could help give a proper evaluation. I also gave him contact information for a professional society dedicated to finding a cure for this disease and who could also provide better guidance. However, I did look at the prospectus and spoke to some folks about said disease and really it didn’t seem to me like this would be the best use of this person’s money. The investigator didn’t seem to have a long track record working on this disease nor any current funding for this type of work. Which to me poses an ethical dilemma, clearly this donor is invested in funding the best research for a disease to which they probably have a personal connection to, and clearly since funding is so screwy it is becoming more common for individual investigators to make direct philanthropic appeals to fund their own research. However is the best research being funded or are development offices taking advantage of someone’s goodwill? Clearly this was a case where advice from a panel of independent experts would be useful and hopefully my friend told his friend to get in contact with the experts (although he also made it sound like this donation was a done deal). But I don’t really feel comfortable directly advising my friend not to fund these people as I’m not an expert, even if my instinct tells me that his money might be better used elsewhere. Perhaps donated to the professional organization which can then allocated as grants.

9 responses so far

  • drugmonkey says:

    Probably your best role here is to better explain how research goes down and what this person is likely to see for the money? Help them to make their own informed choices?

  • MorganPhD says:

    The "best" research is completely relative. I mean, you could look up the most recent Cell, Science, or Nature papers in that disease area. Does that mean "best"? Or look on NIH Reporter for other people currently funded in that area? Does that mean they are best poised to advance the field? Maybe this PI had a new approach that might spur innovation in that area, even thought they haven't published before on that topic.

    And philanthropic contributions might not always be geared towards funding the "best". Philanthropists have complicated reasons for donating money (ie Koch brothers fund their political agenda and climate denial scientists, but also the MIT cancer center...likely for very different reasons).

    • namnezia says:

      In this case the original findings that were the basis of this research were done by the PI over 10 years ago and nobody seems to have replicated them (or at least followed up on them). He had received NIH funding for this back then but looks like it was never renewed. So it didn't sound like a fresh new idea, at least to me.

  • becca says:

    You say "clearly this donor is invested in funding the best research for a disease". I don't know that that's a fair assumption.
    When I donate to small causes (Kiva or Donor's Choose), I don't choose the "best" projects. I choose interesting ones that I want to see work. In some cases, I *exclude* ones that are so self-evidently great ideas they can easily get funding elsewhere.

    In this case, making sure the donor is aware of the fine work of the professional society focused on the disease is key (if there isn't a non-profit that funds this stuff through peer review to inform the donor about). But donors all have their own motivations, which may have very little to do with maximizing good. It's why there are so many buildings named after people at Ivy league institutions, and so few "operating fund" donations at community colleges.

  • Anon says:

    Close to scientific home story, similar situation.
    Major donor (parent of sick child, rare disease). Donor's primary motivation is to have a treatment AT ALL for child. Options of research to fund are 1) trials of pretty not likely to work therapies based on already attempted mechanism of pathogenesis 2) basic research 3) translational research that will help ongoing and new trials (biomarker of disease progression due to slow etiology of disease making drug trials all but impossible in rare disease context). Honest advice to donor was that based on donors interest was that #3 would be the "best" considering scientific realities.

    Defenses could be made for above option 1 or 2, with their own strengths. For 1, shotgun for the cure, it's in many ways what the donor is asking for. For 2, feed the basic science, funding the right basic research would pull a lab into the sphere of the problem, and considering size of funding, they would almost certainly be able to leverage enough preliminary data for R01 level funding.

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