[I have literally no qualifications to have an opinion on this and everyone should take it with many grains of salt.]
If I ran the world, there are two things I would do to make research on human beings more representative and have higher sample sizes.
First, there are lots of cases where there are multiple treatments for a particular condition, but there isn’t any really solid evidence about which one is the best. (Autism treatment, of course, is an example close to my heart, as is antidepressants.) Right now, people are prescribed a variety of treatments, but the data is pretty much useless, because maybe doctors who have rich patients favor Treatment X and doctors who have poor patients favor Treatment Y and then it’s no surprise that people who get Treatment X fare better.
Instead, we should use this as an opportunity to run a randomized controlled trial! If you’re depressed, your doctor should press a button and get a random SSRI to prescribe you. There would be no extra burden on the patient, because you could use the information about effectiveness and side effects that should be in the patient’s medical records anyway. Result: enormous sample sizes with plenty of real-world validity.
Research should of course be consensual, so the patient can opt out and rely on their doctor’s clinical judgment. I think this should require signing a consent form that says “I UNDERSTAND that there is no clear evidence that one treatment is better than another. I UNDERSTAND that my doctor’s clinical judgment may be influenced by many factors, including but not limited to advertising from pharmaceutical companies.”
This would be easiest, of course, to do in a country that, unlike the US, has a national health system. But I think it would be possible in the US as well.
Second, we would recognize that participating in human-subject research is a necessary part of contributing to society, the same way that jury duty is; everyone has to participate in creating science that benefits everyone. Researchers with an academic affiliation, or who are sponsored by a researcher with an academic affiliation, have the right to pull a random sample of people from the voters’ or drivers’ rolls. If they wanted to research a subpopulation of people, they could send out questionnaires (with an online option, because we are in the 21st century here); only the people who are eligible for the study need show up at the study site.
People would have a right to refuse to participate in any studies with an actual risk, such as drug trials, weight loss studies, or studies which involve sensitive issues like violence or stigmatized traits. However, certain studies would be certified by the institutional review board as minimal risk: for example, spending an hour talking with an interviewer about household chore division or filling out a new personality instrument or having your blood pressure taken before and after you watch a video about puppies. IRBs are currently absurdly strict about ethics, so I expect they will not certify anything as minimal risk unless it is actually minimal.
Once again, the result is studies with large, random sample sizes and a complete end to psychology actually being the discipline of Introduction to Psych Student Studies.
Thing of Things 
Being obligated to answer a personality inventory honestly sounds invasive as hell. Depending on what it is and who’s administering I might prefer to take he mystery drug.
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Same. and feel similar about the household chore thing atm.
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Think that minimal risk actually varies more from person to person and isn’t always obvious.
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I second this. Also, some studies are being done with a clear intent to be used for evil purposes (e.g. gatekeepers openly admitting that they’re running a study to find “a gene of transsexualism” to allow or deny transition based on a blood test in future), and I want my right to refuse to participate in them – partially in the hope that others will do that too, and it will delay this research until the society matures enough to use this knowledge responsibly, and partially because I don’t want myself anywhere near this filth.
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What if it’s done like the ballot so that no human can connect your answers to your identity?
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@ADifferentAnonymous
1. This is actually almost impossible to guarantee. You think that you’re releasing an anonymous data set, but then someone comes around and deanons it: https://www.cs.utexas.edu/~shmat/shmat_oak08netflix.pdf .
2. That still doesn’t address the issue of having the right to not contribute to research done for evil purposes.
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“It’d be nice for things I like if people were forced to do a bunch of stuff I don’t especially mind doing, so let’s force them to do that stuff” is always a bad idea, from first principles*.
I would lie on every mandatory survey simply because someone who thought they were my better was demanding I do it for “society’s” good.
I mean, I assume this is not entirely serious because of the title, but equally it’s labeled as coming with no opinion as to the content, so …
(Several paragraphs of “exactly why coercing people into losing hours of their time because a grad student wanted data for their paper is a bad idea” deleted, because I think we can infer it from the other replies, and thought about the above.)
(* First principles like: “Coercion is so bad per se it has to be justified by vital need”, “people’s idea of what’s an imposition and waste of their time varies, and no central actor is competent to judge or enforce that, nor really morally justified in doing so, see previous”, and the qualms about conscience and “who decides what gets included” mentioned in other comments.)
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“Necessary for the good of society” is an excellent indicator that something evil is about to happen.
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It is necessary for the good of society that murder be illegal.
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Ignoring the tautology, more than a few billions of people disagree/have disagreed with you. They would say that it is necessary for the good of society that the murder of certain people be illegal, or the murder by certain people be illegal.
The other obvious problem is that anyone who claims to know what is good for society is just as mistaken as someone who claims to know what God’s will is, whether or not they are deliberately invoking said entity for their own gain or not.
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I dig it. I’d take it even further, though: I think law changes should routinely be rolled out as RCTs whenever possible.
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“Right now, people are prescribed a variety of treatments, but the data is pretty much useless, because maybe doctors who have rich patients favor Treatment X and doctors who have poor patients favor Treatment Y and then it’s no surprise that people who get Treatment X fare better.”
The correct move here is very clearly “just blag data off the NHS”. Or, if you disapprove of Brits, take data from any country that has a nationalised health service.
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I am pretty sure that even in countries with nationalized health services poor people and rich people live in different neighborhoods and are therefore likely to have different doctors.
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Different doctors, but I don’t see why they’d have different treatments in most cases. All NHS medicine costs the same at the point of use. I guess that maybe doctors in rich areas might be more or less likely to prescribe medication versus suggesting lifestyle changes for some conditions, but I don’t see why they’d predictably prescribe different medication.
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(Sub)cultures can differ on how much faith they have in pills vs certain other treatments. For example, Turkish doctors prescribe twice as much antibiotics as the OECD average. I’ve heard that it is common for patients with high faith in pills to demand pills and that many doctors go along with that, if only for the placebo effect.
For various reasons, I would expect rich areas to have different (sub)cultures than poor areas.
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@ Aapje
That’s a good point. I’m not sure how much patient opinion sways whether medication is prescribed here but it must have at least some effect. Now I think of it, I’ve been known to open a conversation with a doctor by saying “I need antibiotics, give me antibiotics please”, or words to that effect.
What we don’t have is the scenario where people in richer areas are all on more expensive drugs, because the drugs cost the user the same amount of money regardless. I think that should at least improve the results of in-the-field data-gathering.
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Scenario 1: Rich area people are more likely to hear about and demand the more expensive drug, while the poor area people are more passive.
Scenario 2: Rich area doctor has a fairly easy job and thus has more time to stay up to date, to participate in trials and give the patients more attention, while the poor area doctor is much more in triage mode (perhaps tossing out Vicodin prescriptions left and right).
Two possibilities that seem viable, where similar diagnoses get different treatment.
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Yeah there’s still a lot of confounding factors in the NHS. GPs catering to certain populations is an obvious one – as well as geographically this happens demographically; one GP might be the one the university directs students to, this one has doctors who speak x language and is popular in that community, mine has a plaque saying it has some kinda official seal of approval from a local LGBT organisation.
You’ve also got the fact that prescribing patterns have been shown to be affected by demographic – for instance in both pain and psychiatry I remember studies showing that women tend to be prescribed fewer and less powerful medications than men. Then stuff like ‘men on average go to the doctor less often/only for more serious things’ and the same being true of people in 9-5 jobs versus people who aren’t.
And yes, an educated white middle-class-seeming person capable of doing research has a much better chance of getting a GP to prescribe whatever they want, particularly in areas where cutbacks mean GPs are working outside their comfort zone, such as (again) psychiatric meds (other than controlled substances).
Also private healthcare does exist here so a chunk at the wealthy end of the spectrum will be missing from the data. The chunk will be of varying size depending on ‘how much of a ballache this particular thing is to get through on the NHS’ which is not something a foreign researcher, or even one who hasn’t had that medical problem in that geographic area, could easily predict.
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I suspect that just creating the “random treatment” button would go a long way towards achieving part I of the proposal.
Related, a company that’s developing a clinical trial app: https://driver.xyz/
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