Let’s say you want to do a market-related study in which you gain entry to one thousand homes representing sets of people defined by the usual variables of income, ethnicity, urban-suburban lifestyle etc. The first thing you do is to ask a few people, real nice like, if you can go through their stuff and take a lot of photographs and notes. Most of them say no, and you perhaps even discover that the one or two who actually agree to this are odd ducks. So you go to Plan B. This involves breaking into the homes when the people are out so you can get your data despite the fact that they don’t want to participate. But you get caught and can’t do that any more. So, now you are faced with the reality that your research plans are done for.
But wait, there is a way to get similar data without needing any permission from anyone and it is not illegal, and in fact, it could actually be cheaper and easier than your original proposal and, while it may not provide the same exact results, it could even provide BETTER results. Let’s call it Plan C.
Plan C involves looking at every iteration of every single Google Street View picture ever taken anywhere in the US at any time. All of them. The vast majority of these photographs will show you nothing, but every here and there, you will get some data. There will be a shot that shows a thing in an open window, or an open door, or an open garage, or being carried into our out of a person’s house, being delivered, thrown out on the curb, sold in a garage sale, sitting on the lawn after an explosion or fire, or in use (especially yard and garden implements). This is not the same thing as sampling hundreds of houses once each, looking at all contents. But it is sampling the homes lived in by hundreds of millions of people, and sampling them dozens of times over a few years. That could be some amazing data.
And nobody can stop you from studying this source of information or doing this research. If someone does try to stop you with silly regulations from a University or something, just change into a Journalist. Then you’re golden. It would be WRONG to stop a journalist from using this information!
Turns out that this works with genes, but even better. One might want to study the relationship between a putative genetic marker and a possible behavioral thing, like maybe a psychiatric disorder or something, in a genetically bottle necked tribal group somewhere. You can try to get permission to do this, and maybe you’ll get it. Maybe you won’t get permission but you can certainly steal the genetic data from some place and do the research anyway. But people will get mad at you and you’ll not get any more research money.
Or, you can go to Plan C.
Here’s how Plan C works with genes. We have a good idea of the distribution of many genetic markers that have to do with geographical patterns over time. (Some people would use the term “race” in that sentence but that’s incorrect and unnecessary.) So, something like “East Asian” or “Native South American” or “Central African” or whatever has a list of genetic markers that go with it. Genes are supposed to “independently assort” and act all random and all, but they don’t. At the finest level, on chromosomes, genetic markers that are near each other travel together because of “linkage.” More importantly, genes move in populations. So, those East Asian genetic markers are not going to get all mixed up with the Central African genetic markers too often. Also, if you have enough samples, some mixing up doesn’t matter all that much.
So, if you want to study a disease-related “gene” (allele, a variant of a gene, really), if you think such a thing exists, you can effectively study it in a small population of repressed brown people who, tired of repression and exploitation decided to be totally unfair to you and not give you their blood, by looking at the association of LBP (“little brown people”) markers and the alleles of interest. It does not even matter if many of those marker associations are found in totally non LBP people. They are still associated. Genetic lineages are the thing, not human lineages. Humans are merely reasonable approximations of genes, really. Or at least, you can make a case for the associations and get your research funded and published without asking anybody any permissions for anything, just using giant available genetic databases. OK, so, maybe this is not “any genetic research you want.” But it is without permission!
This all sounds very nefarious but may not be. Or maybe it is. I’ll leave that to the ethicists.
By the way, if you are interesting in a big fight on the Internet about genetic research, ethics, “IRB” permissions, LBP’s and science and so on and so forth, I recommend the following, in the order suggested.
DON’T READ THE COMMENTS YET
Then, read this blog post: The Empire Strikes Back by Jonathan Marks
Then, go back to the first blog post (Is the Havasupai Indian Case a Fairy Tale?) and read the comments.
Then, report back here and tell me what you think. Especially about that last comment on the PLOS blog post.
Have a nice evening!