When your genetic information is held against you
My friend Jan Zilinsky recently sent me this blogpost from the NeuroCritic which investigates the repercussions of having biomarkers held against individuals.
In this case, the biomarker was in the brain and indicated a propensity for taking financial risks. Or maybe it didn’t really – the case wasn’t closed – but that was the idea, and the people behind the research mentioned three times in 8 pages that policy makers might want to use already available brain scans to figure out which populations or individuals would be at risk. Here’s an excerpt from their paper:
Our finding suggests the existence of a simple biomarker for risk attitude, at least in the midlife [sic] population we examined in the northeastern United States. … If generalized to other groups, this finding will also imply that individual risk attitudes could, at least to some extent, be measured in many existing medical brain scans, potentially offering a tool for policy makers seeking to characterize the risk attitudes of populations.
The way the researchers did their tests was, as usual, to have them play artificial games of chance and see how different people strategized, and how their brains were different.
Here’s another article I found on biomarkers and risk for psychosis, here’s one on biomarkers and risk for PTSD.
Studies like this are common and I don’t see a reason they won’t become even more common. The question is how we’re going to use them. Here’s a nasty way I could imagine they get used: when you apply for a job, you fill in a questionnaire that puts you into a category, and then people can see what biomarkers are typical for that category, and what the related health risks look like, and then they can decide whether to hire you. Not getting hired doesn’t say anything about your behaviors, just what happens with “people like you”.
I’m largely sidestepping the issue of accuracy. It’s quite likely that, at an individual level, many such predictions will be inaccurate but could still be used by commercial interests – and even be profitable – even so.
In the best case scenario, we would use such knowledge strictly to help people stay healthy. In the worst case, we have a system whereby people are judged by their biomarkers and not their behavior. If there were ever a case for regulation, I think this is it.
mathbabe 
You have the right to remain mutant …
LikeLike
I have actually heard this logic: “Yes, the accuracy may not be as high as we want, but why take a chance?” My jaw dropped when hearing this in 2003, I haven’t been able to pick it up since.
LikeLike
Oh noes biomarkers, it sounds sciency! Just like genetic prediposition to disease is nothing new (has your doctor ever asked you about your family history – guess what you were revealing – your genetic predisition to disease!), if this is true – it too will be nothing new. But of course you have to take a giant leap of faith (and I would say stupidity) to believe a complex trait can narrowed down to few a biomarkers. I would fear the morons that conducted the study more, since they seem to be willing use government force on something so tenuously supported.
LikeLike
Hi Mathbabe. I read the biomarker and PTSD research when it came out. I am a social worker and am trained as a trauma therapist specializing in PTSD. I found the research interesting in that it continues to raise the nature vs nuture aspect of what is, at least in part, a biopsychsocial adaptation to trauma and how the body and mind processes it, but more importantly, how one’s support system helps that person work through the trauma. Not all w trauma develop PTSD – the question is why? There is also recent research and replication studies that indicate that “forcing” someone to work through their trauma prematurely can result in PTSD, rather than prevent it. There was also a recent research paper published in JAMA that showed minor traumatic brain injury is a predictor of PTSD, and that the severity of the injury is not correlated with the eventual development of PTSD. Does that mean someone who gets a minor concussion from a car accident, or slipping on black ice and hitting their head, or getting their head slammed into a wall by someone else, should be blacklisted from job opportunities bc they may develop PTSD? I read your work religiously because I think there is a very strong linkage between data science and human development and experience. I agree the studies will become more common, and perhaps for good, but you can’t keep someone healthy if you can’t predict, for example, who will experience trauma, number 1 and then 2, if they will develop PTSD. I think we are back to research is good and interesting, but behavior changes with circumstances, and perhaps that is what is so frightening – trying to predict what may happen, and how a person might react, because they have a biomarker that is nature, but has been supressed, successfully, by nuture.
LikeLike
As one who admires your work on Value Added Measures I think you are probably aware that these biomarkers are more likely to be MIS-used than used appropriately… and I’m sure you and your readers can think of all kinds of mischief schools could get into using these kinds of “measurements”… I mean if colleges are using SATs as a basis for admission, why not use biometrics? If you think I’m being too cynical, read this post from Salon: http://www.scienceworldreport.com/articles/17205/20140916/brain-scans-help-detect-early-childhood-reading-problems.htm
LikeLike
Giving questionnaires to job applicants is already done. People are already selected for propensity for taking financial risk, for instance, whether there is a questionnaire for that or not. Does making questionnaires more accurate change the ethics of using them?
IIUC, in the US employment discrimination based upon genetic information is already prohibited by the Genetic Information Nondiscrimination Act of 2008 (GINA). Attempts to get around that by using cleverly crafted questions could certainly be contested in court.
LikeLike
When he “biomarker” is skin color, it’s called “profiling”.
Marginalizing people on the basis of “biomarkers” is a return of eugenics.
“Evil grows …”
LikeLike
Genetic markers are oftentimes accurate indicators for behavior. Studies have shown over and over again how behavioral traits like alcoholism and impulsive behavior have genetic roots. A quick google search would reveal many such studies. For instance: http://www.sciencedaily.com/releases/2011/04/110412101328.htm
Even if these studies yield little merit, at least they give insurance companies a peace of mind. That way the vast majority of us, who probably don’t have those traits, can have lower rates.
LikeLike
Phrenology uses biomarkers
LikeLike
What’s your point?
LikeLike
Can’t help but think of this: http://en.wikipedia.org/wiki/Gattaca
I think one of the moral drivers — both here and in classic “experimental philosophy” results in ethics (like this: http://en.wikipedia.org/wiki/Trolley_problem) is whether we feel the people involved are reaping the consequences of intentional acts (they have control) or are being rewarded or punished for circumstances they did not intentionally bring about (beyond their control).
However — at least in my case — two uncomfortable facts have arisen in going deeper. The first is that (especially given the close interconnections between our body, brain, and mind) the line between what we control and what we don’t (and is happening without volition in our body) is fuzzy at best. The second is that the role of circumstance, situation, and even chance in our lives (and the lives of others) is far, far greater than most of us like to admit (or at least in a systematic way, when it’s in our favor or against others: for example, http://en.wikipedia.org/wiki/Fundamental_attribution_error).
LikeLike
I’m pretty much against most methodologies that say “people like you” generally do x, therefore you as an individual generally do x. It’s an offensive misuse of science that’s done constantly as ideas move out of universities and into practice.
It’s been unfair for decades to pretty much anyone who defies a stereotype or an average. This includes women in their late twenties who don’t want to have kids but are looking for a job and men in their early 20s buying car insurance, both places where the dominant story marginalizes individuals who don’t fit it.
The fact that we can now use “science” instead of actuarial studies, stereotyping, or phrenology does absolutely nothing for those that don’t fit whatever profile is developed. The averages predict nothing, they are merely the result of a wide range of inputs.
A few weeks ago, Cathy made a great post about telling the story for people at different points on the income distribution, her main point is that there was very little information contained in the average. I’d love to see that idea scaled up to all kinds of statistical information we deal with today, health, insurance rates, pretty much anything that uses an average to talk about a large range of people.
LikeLike
You are a risk-taker. Doubtless you are sensitive to threats against your opportunities.
You are also a woman. You have experienced situations where possession of a uterus has been used as an irrelevant criterion. Doubly sensitive.
There are people whose biomarker is lack of this dangerous risk-taking gene-set. IF risk-taking is held against you, then risk-refusing is held for them.
Surely you would hesitate enter a bus or taxi whose conductor takes chances at railway crossings. I expect we can all think of jobs where risk-refusal is essential. I will even bet that Lisa the Sport Therapist above has counselled many who are physically or mentally unsuited to the sport of their dreams, that they must accept less or work more or retire.
The problem is not discrimination, it is whether the discrimination is unreasonable, or mistaken, or unjust.
LikeLike