Genome databases, Google databases, medical record data bases, credit card histories, online identifiability, phone records, GPS records, nosy spies, and other current forms of information collection and storage are changing our way of life. This is so pervasive that the new term 'Big Data' has been coined to give it cachet by those who are collecting and using it. Big Data bases are of concern to many, but it's also true that many or most of us are willingly contributing to them, even if we're aware of the potential downfalls.
We still talk on our cell phones, tweet, buy from Amazon using Google, know that our medical records are being computerized, use credit cards, post to blogs and confess all on Facebook. We lay this stuff out for the public to see, even knowing it can (and will) be accessed by various corporate institutions (who promise confidentiality of various forms). Presumably, the remoteness or degree to which we are blind to the behind-the-scenes uses of Big Data keeps us from worrying about it, relative to the convenience and short-term gain (a quick purchase, a quick exchange of messages).
Some aspects of Big Data were rather unanticipated by most people. Only some geneticists realized that from DNA sequence databases, various things about each individual, and individual families and identification, would be possible (as described here). Actually, even a few seemingly anonymous facts can be assembled to pinpoint a person and his/her habits (where they buy things using a given credit card, their zip code, things they say on Twitter, stores or restaurants they've used, and the like). Few of us really thought out the implications of the way Google knows our every move, because Google makes it (and our Gmails, and tweets, and Facebook pages) useful for them to target commercial and who knows what else to us individually.
And even if the data were somehow so encrypted that these individual identifications were not possible, even in principle, the aggregate information can be used in many ways that affect us as individuals--products and prices, targeted advertising, and so on.
In a way, we have placed implicit trust that we won't be exploited unfairly--by our individual standards of fairness--even though any thinking person knows that misuse is possible and therefore that at least some misuse is inevitable. If knowledge is power, and power corrupts, that is rather clear.
Here at Penn State there is a big kerfuffle about a mandatory 'wellness' screening program for employees, including physical exam, questionnaire about personal habits and behavior, and a biometric screen (lipids, bloodpressure, glucose, etc.). It's voluntary....well, except that if you decline to participate, your monthly salary deduction for health care will be surtaxed by $100! The promise is that the healthcare provider and the data collector will maintain individual confidentiality so that my personal habits won't be used to adjust my healthcare premiums. Not many people trust either that this will be kept confidential nor that it won't some day soon be used to charge each of us a different rate--that may make airline fare schemes look downright benign. The company taking the survey (which, for various reasons is a hugely unreliable source of actual medical information) is purportedly using (i.e., selling) such data to commercial outfits like drug companies so they can tailor ads and so on based on the risk pool, and such like.
Whether this is true or not, whether any form of national health care, in this country at least, could really be mainly in the public interest, is debatable. Our profit-based way of life (that we ironically call 'privatized' despite the abuse of privacy!) is deeply entrenched, and most of us have a stake in it even if we don't realize it (for example, our pension plans are based on stock investment, etc.). The acceptable limits of abuse or greed is a kind of social decision that will have to be made in real time, as instances arise that get public attention (much as there is at least a tepid reaction to the news about NSA use of phone records, that may lead to a least some tempering of that usage).
But if we step back a bit, it may be that our very notion of privacy is a rather recent social fact, a kind of luxury that few of our ancestors enjoyed. Perhaps most of our ancestors would wonder why we felt as we did about 'privacy' or what aspects were even right. The vast majority of people in the history of our species (probably including the majority alive today) lived in very small, local groups, largely of various levels of kinship, in which as the saying goes, everybody knows what everybody else is doing. Instead of laws, many societies rely on gossip to constrain improper behavior and maintain an acceptable level of power differences. If you were sick, you consulted the shaman, often in open purging ceremonies, and so on.
Who you married, even when you had sex, how much resources you had, who you associated with, your religion or beliefs, your quirks, strengths, weaknesses, things to admire and things to fear about you were common knowledge. You may have worn clothing that covered what the local culture thought should be private (e.g., your 'privates'), but the rest of you was, so to speak, laid bare.
But as society became agricultural and settled, and perhaps more lived in cities (though even until very very recently that was only a small fraction of the population, even in urban civilizations like Europe and the US and Japan etc.), more people and more complex activities (jobs, companies, apartment complexes or private homes separated from open view) made some aspects of life more inaccessible and hence private. People may have gotten used to it, especially those who were better off, to protect them from jealousy and robbery etc. The poor lived, and still live, in more traditionally exposed ways. Think of slums and favellas, tenements, and more.
So it may be that what we are witnessing is that technological advances have in a way begun to restore us to a kind of non-private village life. It's true that in a traditional village, you knew who might be saying what about you directly, but here we know who the snoops are, at least in generic terms (that is, it's Google, 23andMe, Verizon, WebMD. It's a change of detail, but perhaps not so much in substance and implication as we might think.
So what we may be experiencing is the technologically driven end to a brief, anomalous era of privacy. Because it seems so new and hence unnatural, we resist--at the same time that we keep using cell phones, chats, Google, and Amazon.
The debates about Big Data, medical or commercial, will work out in some ways how the return to village life will take place.....
Showing posts with label privacy. Show all posts
Showing posts with label privacy. Show all posts
Thursday, August 15, 2013
Monday, June 22, 2009
The death of privacy: an anthropological perspective
For most of the world's creatures now and ever, life is a naked phenomenon. Organisms, their phenotypes and their behavior, were lived entirely in the open. Mating, selection, survival and so on all occurred that way. Those were the kinds of groups in which we too evolved as a species. So, how did privacy become so important to us? We can imagine a scenario; human history at warp speed.
For tens of thousands of years, predominantly small ancestral bands of close kin made their living by hunting and gathering, dwelling around a camp (and, eventually, a campfire). Local groups moved around frequently, abandoning sites and finding new ones--for example, to follow food resources. All must have been public, and basically nothing private. That included the shared and basically equal nature of material possessions, as well as the nature of each person's physical and behavioral traits. Everyone was related to everyone else, in known (indeed, prescribed) ways. It was, perhaps, a gossiper's heaven, since everything was known about everyone by everybody.
Over thousands of years, especially after the implementation of agriculture 10,000 years ago, large, permanently settled but no longer kin-based populations became our environment. Individuals increasingly lived in isolated nuclear (or perhaps 3-generation) families in separate dwellings. They acquired and could accumulate personal possessions, largely interacting with people unrelated to themselves in any known way. Close relatives knew a lot about their own affairs, but less about others'. Society became more unequal, and people developed increasingly private lives, as we know them today.
Very large societies require administrative structures (governments) for protections of all sorts, and to avoid the chaos of conflicts of interest and personal conflicts. This includes the protection of individuals' privacy from intrusion by others (which we name 'crime'). Industrial societies, at least in part because of the growing inequities they developed, came increasingly to recognize personal privacy, including ownership, as important or even fundamental.
Disputes, that traditionally were settled by the families involved, or by a local strong-man, became society's business, with standardized codes of acceptable behavior and of sanctions for violations, that is, laws. Probably beginning with property, society protected individual possession as well as individual rights not to disclose possessions.
Humans build their emotions and belief systems around their ways of life. So, associated with these societal privacy traits were senses of outrage or embarrassment if the traits became known. They may make a person vulnerable to social or material risks, by revealing weaknesses, or his deceits, greed, and the like.
Personal traits including health became largely private unless revealed by the individual or family, but physicians necessarily had to know. As a result, even in the Hippocratic oath around 2400 years ago, physicians promise that
There are many obvious reasons for this. The healthy could easily take advantage of the sick or even of health risks they know such people may face. Relatives would perforce know a lot, but could be trusted, at least comparatively. In modern times, the obvious reasons for health privacy include the possibility that disease may be used to discriminate against people in various ways (jobs, insurance, etc.), and this would go against the legalized sense of things-that-are-nobody-else's-business.
Medical genetic data on their surface can be viewed simply as another source of diagnostic or therapeutic information, like blood pressure or 'where does it hurt?' But there are several basic differences:
It is for this reason that many are concerned about privacy issues in relation to 'personalized medicine' which, at its core means computerized storage and analysis of DNA sequence data for the purposes of assessing existing or potential phenotypes of the individual (not just a group).
There are many professional bioethicists thinking about this, as well as lawyers, journalists, legislators, and scientists. Indeed, we ourselves are happy to be helping train a graduate student who is both knowledgeable in modern genetics and a practicing lawyer. She should be an unusually qualified individual to help as society negotiates between science, society, and the law.
A lot of worry is being expressed, some of it professional angst (making careers out of the issues), given that it seems wholly inevitable that, barring some gross national trauma, personal DNA sequence data bases are inevitably going to proliferate. Unless we get bored with genetics, our technological age is in love with DNA and is widely embracing it, both to great profit and because of the accepted promise of major health advances.
Much of this debate is moot because the lid certainly cannot be kept on such a bottle. Data bases will increase, become more shared, computerized, coordinated, public, and difficult to contain. Interpretation of all sorts will accompany that growth. More and more people will learn more and more about more and more people--or at least will think they did.
How far this goes nobody can know, but it may be most useful to think ahead and stop knotting one's stomach about the details of regulation. Let's do something that is probably more useful to think about: let's assume that everyone's complete DNA sequence and its interpretation is entirely public, and can be known to anybody who wants to look. Let's further make the au courant assumption that DNA is the deterministic causal blueprint for who and what each of us is.
Such changes are to a great extent likely to occur, and in a way they spell the death of much of the sense of privacy that we have lived with for the roughly 10,000 years since the dawn of settled agricultural societies.
Younger generations will be born into this system, after us grouchy old goats pass the scene. For new generations this will just be how things are. The effects of such data, and how they're handled, will be worked out--fallibly, imperfectly and with abuses, as always in human affairs. But we will work them out! We know that, as humans, we can live publicly naked lives. That doesn't mean we can do it free of trauma, and history does not suggest we'll always do otherwise. In a sense, in regard to this particular issue, in shedding our privacy clothes, we'll be going back to our beginnings.
For tens of thousands of years, predominantly small ancestral bands of close kin made their living by hunting and gathering, dwelling around a camp (and, eventually, a campfire). Local groups moved around frequently, abandoning sites and finding new ones--for example, to follow food resources. All must have been public, and basically nothing private. That included the shared and basically equal nature of material possessions, as well as the nature of each person's physical and behavioral traits. Everyone was related to everyone else, in known (indeed, prescribed) ways. It was, perhaps, a gossiper's heaven, since everything was known about everyone by everybody.
Over thousands of years, especially after the implementation of agriculture 10,000 years ago, large, permanently settled but no longer kin-based populations became our environment. Individuals increasingly lived in isolated nuclear (or perhaps 3-generation) families in separate dwellings. They acquired and could accumulate personal possessions, largely interacting with people unrelated to themselves in any known way. Close relatives knew a lot about their own affairs, but less about others'. Society became more unequal, and people developed increasingly private lives, as we know them today.
Very large societies require administrative structures (governments) for protections of all sorts, and to avoid the chaos of conflicts of interest and personal conflicts. This includes the protection of individuals' privacy from intrusion by others (which we name 'crime'). Industrial societies, at least in part because of the growing inequities they developed, came increasingly to recognize personal privacy, including ownership, as important or even fundamental.
Disputes, that traditionally were settled by the families involved, or by a local strong-man, became society's business, with standardized codes of acceptable behavior and of sanctions for violations, that is, laws. Probably beginning with property, society protected individual possession as well as individual rights not to disclose possessions.
Humans build their emotions and belief systems around their ways of life. So, associated with these societal privacy traits were senses of outrage or embarrassment if the traits became known. They may make a person vulnerable to social or material risks, by revealing weaknesses, or his deceits, greed, and the like.
Personal traits including health became largely private unless revealed by the individual or family, but physicians necessarily had to know. As a result, even in the Hippocratic oath around 2400 years ago, physicians promise that
"All that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal."
There are many obvious reasons for this. The healthy could easily take advantage of the sick or even of health risks they know such people may face. Relatives would perforce know a lot, but could be trusted, at least comparatively. In modern times, the obvious reasons for health privacy include the possibility that disease may be used to discriminate against people in various ways (jobs, insurance, etc.), and this would go against the legalized sense of things-that-are-nobody-else's-business.
Medical genetic data on their surface can be viewed simply as another source of diagnostic or therapeutic information, like blood pressure or 'where does it hurt?' But there are several basic differences:
- Genetic data about a person are also informative about his/her relatives
- Genetic data can be informative about any of the person's characteristics, not just the currently-presenting disease, and including normal as well as disease traits
- Genetic data may be of predictive value about a person's future, in a way that vested interests can use to discriminate among people to their detriment and the gain of the discriminator (e.g., HMO, insurer, employer, pension plan). Even police and the military get into the act in many forensic, security, or other ways.
It is for this reason that many are concerned about privacy issues in relation to 'personalized medicine' which, at its core means computerized storage and analysis of DNA sequence data for the purposes of assessing existing or potential phenotypes of the individual (not just a group).
There are many professional bioethicists thinking about this, as well as lawyers, journalists, legislators, and scientists. Indeed, we ourselves are happy to be helping train a graduate student who is both knowledgeable in modern genetics and a practicing lawyer. She should be an unusually qualified individual to help as society negotiates between science, society, and the law.
A lot of worry is being expressed, some of it professional angst (making careers out of the issues), given that it seems wholly inevitable that, barring some gross national trauma, personal DNA sequence data bases are inevitably going to proliferate. Unless we get bored with genetics, our technological age is in love with DNA and is widely embracing it, both to great profit and because of the accepted promise of major health advances.
Much of this debate is moot because the lid certainly cannot be kept on such a bottle. Data bases will increase, become more shared, computerized, coordinated, public, and difficult to contain. Interpretation of all sorts will accompany that growth. More and more people will learn more and more about more and more people--or at least will think they did.
How far this goes nobody can know, but it may be most useful to think ahead and stop knotting one's stomach about the details of regulation. Let's do something that is probably more useful to think about: let's assume that everyone's complete DNA sequence and its interpretation is entirely public, and can be known to anybody who wants to look. Let's further make the au courant assumption that DNA is the deterministic causal blueprint for who and what each of us is.
Such changes are to a great extent likely to occur, and in a way they spell the death of much of the sense of privacy that we have lived with for the roughly 10,000 years since the dawn of settled agricultural societies.
Younger generations will be born into this system, after us grouchy old goats pass the scene. For new generations this will just be how things are. The effects of such data, and how they're handled, will be worked out--fallibly, imperfectly and with abuses, as always in human affairs. But we will work them out! We know that, as humans, we can live publicly naked lives. That doesn't mean we can do it free of trauma, and history does not suggest we'll always do otherwise. In a sense, in regard to this particular issue, in shedding our privacy clothes, we'll be going back to our beginnings.
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