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.