Medical research is both derided and essential. The public complains that a new experimental drug is not available due to the FDA being too conservative while also complaining that drugs have too many side effects and companies should be sued over the lack of proper testing before release. In popular television, every show that has a character who enrolls in a medical research trial develops giant boils and body tics, it is a humor standby to show that medical research is only done by the economically desperate. In research itself, scientists trust other scientists little and they trust researchers not under the government umbrella even less. Corporations are bad and pharmaceutical companies worst of all.
Yet without medical research and pharmaceutical corporations, virtually none of modern medicine would exist. Unlike big physics or astronomy, government-controlled science doesn't work for medicine, so we would be lost without the private sector. The problem is that drug companies have created their own public relations headaches. One example: They are marketing the vaccine for the human papillomavirus (HPV) - which causes 70% of cervical cancers - to boys now, who obviously have no cervix, by saying the 7,000 cases of throat cancer per year are due to HPV. But other groups say those same cases are due to cigarette smoking, second-hand smoke and air pollution, so we could spend billions on a new vaccine and save almost no one.
It's no wonder the anti-vaccine movement has spread among the Whole Foods demographic that was already inclined to be anti-science, they believe public health has become corporate welfare and just a marketing gimmick. That mentality dangerously spreads to all aspects of science, which is why states like California and Washington are dangerously anti-science today.
Given the cultural landscape, where modern Scare Journalism alternates with Miracle Vegetable of The Week Stories, and the Four Horsemen Of The Alternative (choose from Chopra, Oz, Gary Null, Joseph Mercola, Andrew Weil and plenty of others) undermine legitimate medicine, I am actually surprised that a nationally representative survey of 2,150 households found that 11% of adults and 5% of children had participated in medical research in the US.
I thought it would be a lot lower. But to Matthew Davis, M.D., M.A.P.P., an associate professor of pediatrics and internal medicine at the University of Michigan Medical School and first author of a recent paper, that figure is far too low, given the importance of research.
Again, it may be low to him, but I am actually surprised it is even that high. Among the public and other scientists, it is open season on medical research. As I said, drug companies have created some of their own PR headaches but it is not like the government is any more ethical. The shocking stories you read about from illegal and unethical medical testing of the past were all done by the government. And if you want to see what medical research looks like once it is taken over by government, look at NASA. Look at the NIH. NASA is a glorified job works program these days and the NIH, despite having "Health" in its name, cares very little about health. They are instead seeking funding for Big Science projects like declaring a War On X Disease, X being whatever is popular in the media. As we have produced more and more scientists paid for by increased government inroads into research, more and more believe that working for the government is the only legitimate way to do research.
Now, the political mindset of modern academics lends itself to liking government control, I get that, but as in medical practice, where the increasing concern is that a generation of doctors are being brought up in a 'teach to the protocol' environment due to government control rather than learning to be creative about treating patients, a new generation of scientists brought up in a government-controlled science environment are going to be missing a lot of creativity. The people who want freedom to do basic research will only go to the private sector and endure the stigma from the public.
So we need to stop assuming that pharmaceutical researchers are less ethical than climate researchers - they are not, all research has its unethical segments - and that people in drug companies don't have kids they care about the same way we all do. It's bad for us, because when companies stop doing medical research, we are stuck. There is a reason academia did not create Silicon Valley or virtually any aspect of modern technology and culture we enjoy, like energy. It's too slow and too isolationist. The private sector works.
So, given the low numbers of people who are still okay with it, who is participating in medical research? Race and ethnicity are not factors, that is at least some good news - everyone distrusts medical research equally so no more "let's experiment on minorities" government projects. It certainly has its share of free thinkers and desperate people. But there may be a knowledge gap among the general population; 64% of adults knew of opportunities to participate in medical research but only 12% of parents said they knew of ways where their kids could participate. What? Not enough awareness about ways companies could experiment on children? Let's spend some advertising money!
Naturally, to solve a problem they helped create, the NIH came up with the National Center for Advancing Translational Sciences (NCATS) and is willing to spend a bunch of money doing what drug companies have always done - translational research - just a lot less efficiently. At least no politician at the NIH has called it a Manhattan Project For Translational Research, that shows they might be migrating slowly into this century.
But will it work? Giving more money to the same research centers they already give money to so those groups can spend money convincing people to participate in medical research, the same thing we have other researchers and the media creating hysteria and scare stories about (when they aren't lamenting that some miracle cure is available in Asia but not yet approved by the ploddingly slow FDA), wouldn't seem to make a lot of sense. It is cloistered government insiders funding other cloistered government insiders.
And who is getting some of this money from the NIH to go recruit people to be experimented on? No surprise, it is one of the co-authors of the paper saying not enough people are volunteering for medical research. Haven't we trained people to be suspicious of anyone who gets funding from anywhere?
Any number of people are going to object to me writing 'experimented on' in the previous paragraph, because that has a negative connotation. That was intentionally emotional verbage, because that is how the public and researchers frame the issue. They have been taught to do so.
We have created a cultural headache using taxpayer money and now have to use taxpayer money to try and fix it. If that doesn't make sense, you see why our government science funding model is archaic.
Citation: Matthew M. Davis M.D., M.A.P.P., Sarah J. Clark M.P.H., Amy T. Butchart M.P.H., Dianne C. Singer M.P.H., Thomas P. Shanley M.D., Debbie S. Gipson M.S., M.D., 'Public Participation in, and Awareness about, Medical Research Opportunities in the Era of Clinical and Translational Research', Clinical and Translational Science, Jan 14, 2013, DOI: 10.1111/cts.12019