Facebook Funding of Medical Research

Freedom Openness
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Hi everyone,

I’m looking for some information, and I hope this community can help!

This will be a longer post than you are probably used to here, but please do bear with me, I believe this is an issue we all feel strongly about. I could have posted this under a few different topics, as it really encompasses a whole number of greater issues.

I am looking to contact someone at the University of California, San Francisco School of Medicine who would have knowledge about the funding of medical research there, particularly in the department of neurosurgery. If any of you have contacts there, I would HUGELY appreciate you letting me know. Here’s the reason why:

I attended the inaugural Mind.Brain.Behavior symposium at Columbia’s Zuckerman Neuroscience Institute this week, which was an incredible experience, discovering all the amazing research being done in the field. It’s one way in which the advancement of tech has been absolutely life-changing in a positive way.

I seemed to be the only one to notice that one of the researchers presenting (from UCSF) had Facebook on his list of research investors, and so, being a professional in the digital wellness space, I didn’t hesitate to ask him during Q&A if he could share with us what Facebook’s interest is in funding his research.

Now, his research is focused on mapping the speech production areas of the brain in order to help people with brain damage and speech impairments. Ultimately, one of the things him and his team hope to do is use that information to perfect the ways in which computers can generate human speech, so that machines of the kind Dr. Stephen Hawking used could do a better job for people who really rely on them to communicate with others.

All wonderful stuff. But, given that Facebook popped up as one of the investors - you can see my concern and the dots that I connected.

The reaction in the room when I asked the question was so interesting. I didn’t even ask my question actually, and the reaction had started already! All I said was, “I noticed that Facebook is one of your investors,” and then I paused, and everyone started to bustle and exchange comments and raise eyebrows - even the researcher made this uncomfortable smile, and then proceeded to tell me that they aren’t actually an “investor” but that his research lab has contracts with lots of different companies (whatever that means), and that he doesn’t really know what their interest is, that I would need to ask them. That was his response in a nutshell.

I would imagine all of you would agree that this is one area that is not being talked about nearly enough, if at all - what are the big tech companies investing their money in, when it comes to research done at universities, labs and other research centers? I try my best to keep on the lookout for patents that these tech giants apply for, but I think we all need to do more.

Getting ‘in front’ of the tech (meaning, deciding what the tech we as individuals use will look like) has so far been incredibly difficult to do, and I think that when it comes to the way tech companies invest money in research we may have an opportunity to do that. Because we all have at least the right to know what research their money is going towards, and then hopefully the right to also decide whether or not they get to use the results of that research on us. Otherwise, we’re no more than lab rats really. Which maybe we’ve become already.

I realize I’m having a slight Erin Brockovich moment here! But I really don’t mean to - I’m going on a tiny amount of information here which is why I want to get in touch with someone at UCSF as soon as possible to understand more. So I don’t want to get too far ahead of myself, and certainly don’t want to make any untrue and/or unnecessary accusations against any of the researchers involved. However, after seeing this new TED talk on Facebook and Brexit, I couldn’t stop thinking about the ethical implications of “allowing” a company (any company) with such an atrocious record of data protection and protection of privacy to invest in research that it will one day be able to use for its own benefits and purposes. And that will impact every single one of us (and our children).

OK, I’m done! If you’ve made it this far thank you SO much! I so appreciate your time.

You can e-mail me at teodora.pavkovic@gmail.com with any information you have that could help me.

Thank you again!
Teodora

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Thank you for sharing this. I added the incredible resource you mention to the resources in our website. And your story is incredible too…

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Please excuse me if I’m misunderstanding… @Teodora in the field of medicine is such a blessing to get funding period. As a practice, Medical research funding usually doesn’t turn away funding to make a statement about values. The focus is on preserving human health and life. With this in mind, I understand a little of what’s going on in the reactions…

I would take great caution in contacting those researchers. The field of medicine works to improve human life through research not political statements.

It’s like going to a running marathon event and asking people why they are handing out plastic water bottles. It’s out of context.

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@healthyswimmer some funding has selfish interest on it. Sometimes there are ethical question and conflict of interest to be considered too among others. Do you think it is appropriate to get funding from facebook and google for this organization?

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@richard1 I’m not sure if your question here is rhetorical but I’ll assume not.

I know what you’re saying about ethics and supporting organizations and accepting help from non ethical organizations. With this said, I’ve built a tolerance for things I’m not sure about though.

Is it right to say an organization, which is doing good for human health and disability should deny accepting funding? At this point Facebook is not proven in the public eye to be criminalized… so we can’t expect “non-experts” in technology to understand this. Healthcare researchers are busy trying to save their own.

People are quick to judge medical researchers in many ways, but will never know the impact it has played in their own life.

I think it’s safe to assume these researchers are doing their best, and had no ill intent to accept funding from Facebook. I agree Facebook is so wrong in many ways, and trust their day will come- but am glad to see some good came out of it all.

I think if people think Facebook is so wrong (and I agree here!), they should go after Facebook, not a medical organization trying to improve people’s lives. That is wrong.

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@healthyswimmer Here is an article about health industry funded researchers and the negative implication to the end beneficiary of the research the patient. In the case of facebook funded research we don’t know if is good for us or against us? Maybe fb record speaks for itself.

https://www.nytimes.com/2018/12/08/health/medical-journals-conflicts-of-interest.html

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@richard1 This NY Times article you are referring to does not talk about Ucsf medical center and these researchers.

I work with these people and there is no ill will here.

No conspiracy period.

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@healthyswimmer what I’m trying to point out that not all organization who provide funds are doing it because of generosity or for some higher purpose but they are doing it to give them some advantage to influence and eventually beneficial to the organization for their selfish interest at the expense of others.

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Thank you, @Teodora. It’s important to ask the questions. Let us know if you find the answers. :sunflower:

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@richard1 I see what you are saying- Donations to non profits have historically been not exactly altruistic. I can’t stand Facebook- but we run the risk of losing our positive image by “going after” university researchers questioning complex decision processes used in accepting funding.

UCSF is under strict ethical control with the state of California. California state university research funding is under a close microscope already with the consequence of losing state funding.

Just have to be careful here- and pick the battles… Don’t assume something evil will come of a non-altruistic donor. We don’t want to appear like angry activists.

One more thing. No person who donates money to medical research has any rights to the data collected. The data collected isn’t even “owned by” researchers.

This conversation is so off base and devalues us as a humane community. Our time is much better spent spending time on projects here on the forum. We cannot vet members of our community as a group or organize such activity.

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It would be nice if we could collect informations aber medical research funded by internet companies.
These results will be included in the next versions of their products.

The earlier this information becomes public, the better it can be counteracted.

Thanks for sharing!

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Thank you all for contributing your views on this topic!

It is a highly divisive one since so many different sides are involved and so many different interests are at hand. I expected some level of misunderstanding to occur in terms of what my position is on this topic and it did, but that’s bound to happen and I don’t think there’s any need for me to further explain. It would take away from the ultimate point which was to raise some awareness and I think that was accomplished.

As a slight aside, I wanted to recommend to you all the new HBO documentary “The Inventor.” I just watched it today and am still reeling from it! An incredible look into Theranos, and what happens when you take the “move fast and break things” motto from the tech space and place it within the field of medicine. Add in a young, smart, persistent, ambitious individual as well as some of the most powerful people in the world, and you get what we got with Theranos.

Hope you all have a wonderful day!

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