Genes are not a mirror upon our souls

By Razib Khan | March 31, 2013 6:09 pm

I have put 1 million markers (from a combination of Illumina SNP-chips) of mine online. I’m also going to put my sequence online when I get it done. Why? What do I gain from this? Hopefully I don’t gain anything from it. By this, I mean that the only major information that is actionable in a life altering sense is likely to be disease related. Though I’ve been contacted about possible loss of function mutations through imputation, so far my genotype has not illuminated any more risk susceptibilities. Rather, I am trying to make it clear by my openness that your genetic information has more power when pooled together with that of others, and small one step in creating that vast pool of information is to demystifying sharing it, and practicing what you (that is, me) preach. My soul is not in my genes, and certainly my genotype reflects me with far less obvious fidelity than a photograph would. By this, I mean that there are many traits that one could predict about me, but many one would be at a loss to predict.

To me this is a coordination problem. The more genetic and phenotypic information researchers and analytic software have, the more correlational juice one might squeeze out of the vast cloud of data. But the temptation here will be to free ride, and keep one’s own genome private, while one benefit from the openness of others (to some extent, this is what happens when you have medical research subjects, whose results are used for the gain of the public, which pays, but does not participate). I can see why someone would not want to divulge their health information. A list of venereal diseases may be a source of shame, whether you find it justifiable or not. There is a reasonable ground for privacy, because communicable diseases are reflective often of life choices one has made. When it comes to genes if you have a major loss of function mutation or a disease which is likely to develop at some point before your death (e.g., early onset Alzheimer’s disease), then there are clear grounds for keeping that information close to the vest. But you don’t bear any responsibility for your genotype, nor do you gain any merit or demerit from your genotype. It is a contingent accident of history, and the information is not who you are, it is just the loading of the die you were given by dint of your birth.

This not just about genetics. It is about life. We already have many private firms, from credit rating agencies to Facebook, to marketers, to the government, monitoring our movement, and attempting to anticipate our choices. One can opt out from this information ecology, but unless one goes off the grid and lives in a subsistence lifestyle it can be a part-time job to do this. Mind you, there are gains to this information ecology, as you are solicited for products and services which previous choices suggest you would be predisposed toward. Similarly, there are upsides and downsides toward an open health and genetic information ecology. If you have a risk allele for a disease with a diet interaction effect, then there is a clear course of action. My own hunch is that this world is coming, no matter our wish, and we need to act in its early phases to grasp the shape of the future and set the parameters of the game. We can’t be passive. The information cloud is going to be there, and someone will parcel and claim it.

It may be trite, but when I push for open genomics on my friends and family I’m not telling them what they may gain. Rather, I’m arguing that the world may gain, and therefore downstream we may gain.

CATEGORIZED UNDER: Genomics, Personal Genomics
MORE ABOUT: Personal genomics
  • Paul Conroy

    Well put. I’ve open sourced all my genetic data to date.

    I also have the variants linked to the more acute forms of Alzheimer’s Disease, as does my second daughter… but like you say, my loss of privacy about these things is society’s gain, and more immediately, maybe if I am to develop this disease, my daughter will not, as a cure may be available in the meanwhile…

  • marcel proust

    You have previously stated what is almost a syllogism:[1]

    (a) In pretty much all mammals studied, many personality traits, including intelligence, are clearly inherited (e.g., silver fox study in Russia).

    (b) There is no reason to think humans are entirely different from other mammals on this dimension.

    (c) Therefore, it is very likely that in humans, many personality traits, including intelligence, are inherited.

    Obviously, we are not anywhere close to being able to draw lines from genes or combinations of genes to specific personality traits or intelligence. Perhaps in our lifetime, we will. Is this the sort of information that you would be happy that prospective employers can easily access, or is it possibly like a lot of stuff people — kids — put up on facebook, not thinking about the consequences later in life?

    [1] No intent of putting words in your mouth; rather I am stating what I understand to be your position so that it is clear what I am asking about.

    • razibkhan

      Is this the sort of information that you would be happy that prospective employers can easily access, or is it possibly like a lot of stuff people — kids — put up on facebook, not thinking about the consequences later in life?

      if prospective employers can get facebook’s data they have this information. because it’s heritable *phenotype* is highly predictive. much more predictive than any given gene. marketers almost certainly have this sort of personality information, even credit worthiness, based partly in relative correlations.

      • Dmitry Pruss

        facebook data? Most people engage is severe self-censorship of their online activities precisely because they don’t believe in online privacy. Online shopping and browsing habits gives too loose an approximation of one’s core strengths and weaknesses. Besides, these habits reflect shorter-term societal influences and pressures, while in long term, genetic determinants of behaviors may be better predictors.

        But Razib, if your goal is to assist genotype-phenotype causality research, then you’d be shortchanging this goal by sharing the genotype side and not the totality of your phenotype. You’d need your entire life history out there in the public domain for it to work. That’s the biggest problem I see almost daily, how all the data to trust is the genotype, while the reported phenotypes are all omission, misinterpretation, and misrepresentation.

        • razibkhan

          Online shopping and browsing habits gives too loose an approximation of one’s core strengths and weaknesses.

          do you have inside information? knowing people who have worked at fbook and google i’m moderately sure you’re wrong, really hilarious advert targeting notwithstanding. it isn’t as if marketing/credit agencies haven’t figured out how to correct for attempts to mask behavior years ago.

          You’d need your entire life history out there in the public domain for it to work.

          you are correct. i’ll be honest and admit i’m a little more wary of non-obvious phenotypic information being out there. but once i get wired up with quantified self type analysis i plan to.

          • Dmitry Pruss

            people who have worked at fbook and google

            and who may have achieved impressive results using a subset with severe ascertainment bias? Typically when the online-habit researchers want to demonstrate their power in predicting personality traits, they are compelled to use a set of subjects who simultaneously disclosed their personality traits, lacked online privacy concerns, and left vast digital footprints. Like the subjects in a recent study who had tons of fb likes and shared everything and also fell for an online personality quiz.

            Perhaps for these extremely gullible and extremely traceable people, the online behavior is predictive. Probably not so for the rest of us. Besides, these sorts of metric-behavior correlations might *seem* to be highly predictive because the algorithms use far too many inputs to measure far too few outputs; then the magic will only last as long as you keep polishing it with your training set, and it will disappear in a validation set.

          • razibkhan

            i’ll look into this.

    • http://www.facebook.com/profile.php?id=715871963 Lynn Gazis-Sax

      “Therefore, it is very likely that in humans, many personality traits, including intelligence, are inherited.”

      That might be a reason to hesitate, but is it an absolute bar? My actual intelligence is a matter of public record; I have a degree from Stanford University. Compared to that fact, the fact that I carry various genes that may hypothetically allow someone to predict my already known intelligence seems a small matter.

      I’ve already blogged about one gene that I carry that may have implications for my personality traits (a “warrior” variant of a “worrier/warrior” gene); while I’m still not prepared to go as far as Razib Khan and open source the whole lot, I don’t see this as obviously something to avoid. It might depend on the genes and the traits.

      (On the other hand, anonymity does seem to me to be the way to go if you want a lot of genomes for research.)

  • https://delicious.com/robertford Robert Ford

    would there be any point in making my genome public? I’m just a normal white guy with no family history of disease. just wondering

    • S.J. Esposito

      Of course. How ‘interesting’ your genome is matters not (in terms of going public of course… I’m sure it matters to you!). The point is to add datapoints to the greater dataset. There’s much more utility in a dataset of multiple genome sequences than there is in any single individual’s alone.

  • ohwilleke

    In the context of anonymized research, sharing is great.
    In the context of pure public exposure of private facts wisdom, not so great. I’m inclined to think that this might be the equivalent of putting yourself into an FBI database or revealing your Social Security number. It undermined bioidentification based security systems that might use that data by allowing others to get what some quicky low resolution DNA test security might or facilitating fake DNA test inheritance claims, for example, while exposing you to random matches with partial forensic DNA which is a lot less prone to false positives when just people with criminal records are in the system than it is when everyone’s DNA is available to be searched in the absence of suspicion (since you would have given up an expectation of privacy in the data). Note that some of the lack of anonymity impacts everyone closely related to you as well.
    Finally, newly discovered functional markers might be used to redline people having some risk factor (who knows what) if legally permitted. Ancestry informative markers correlated with ethnicity associated outcomes, for example, could be used for back door racial or ethnic discrimination that judges and juries might not realize is what is really going on in practice.

  • Odoacer

    I heard Jonathan Rothberg speak today. His talk focused on his career and the tremendous gains in sequencing technology over it. He made a lot of points that were similar to what you’ve written over the years. He really emphasized the coming (already here?) $1000 genome, and that the future is already here, seeing as we can sequence millions of bps in an afternoon.*

    Speaking of making things public, he related that when they published Watson’s genome, they redacted his ApoE information (due to Watson’s concerns about Alzheimer’s susceptibility). However, people were able to correctly deduce Watson’s ApoE info due to his haplotype. His point being that anonymity, wrt genetic information, is probably impossible.

    *He had an amusing anecdote about how it took him six years in the late 80′s to sequence 9,000 bps of a single gene via Sanger sequencing.

  • Odoacer

    Apologies is this already posted, but my comment was cut off:

    Speaking of making things public, Rothberg related that when they published Watson’s genome, they redacted his ApoE information (due to Watson’s concerns about Alzheimer’s susceptibility). However, people were able to correctly deduce Watson’s ApoE info due to his haplotype. His point being that anonymity, wrt genetic information, is probably impossible.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2986051

    *He had an amusing anecdote about how it took him six years in the late 80′s to sequence 9,000 bps of a single gene via Sanger sequencing.

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Gene Expression

This blog is about evolution, genetics, genomics and their interstices. Please beware that comments are aggressively moderated. Uncivil or churlish comments will likely get you banned immediately, so make any contribution count!

About Razib Khan

I have degrees in biology and biochemistry, a passion for genetics, history, and philosophy, and shrimp is my favorite food. In relation to nationality I'm a American Northwesterner, in politics I'm a reactionary, and as for religion I have none (I'm an atheist). If you want to know more, see the links at http://www.razib.com

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