Genetic privacy: there ought to be a law.

If you don't believe in privacy, you probably don't believe in genetic privacy. I believe in privacy, including the constitutional right of privacy. But my interest is not to persuade you to believe in privacy, but rather to expose the major issues involved in genetic privacy. What makes genetic information different from other sensitive medical information? Are we getting carried away? Are we just treating DNA based information differently because it is new? We protect certain sensitive medical information by statute: mental health information, information about alcoholism, drug treatment, and abortion.1 There is a lot of information we take very seriously and treat very, very privately. The question is whether we should treat genetic information like other especially sensitive medical information, or whether new rules are needed. They would not be constitutional rules-I would certainly agree with Judge Bork on that issue.2 If we want to protect genetic information, the protection must be statutory. I want to begin by talking about why we might see genetic information as special. Historically, we have thought of privacy in this country in at least four different ways. There is private information-- information that we do not want revealed about ourselves. There are private relationships husband-wife, priest-penitent and lawyer-client. The law also recognizes private decisions: whether or riot to use contraception, or whether or not to have an abortion. Finally, there are private places where we have an expectation of privacy: the bedroom or the phone booth, for example. Genetic information actually transects three of these four, and that is one argument for why such information is more powerfully private than other types of information. It is information about us, very private information about our likely future health. Moreover, this information is not just about us. It could also be seen relationally, because it tells us information about our parents, our siblings, and our children. If you happen to be a genetic twin-an unusual circumstance-then your genes tell exactly the same story about your twin as they tell about you. It is also information that is very important for private decision-making: who to marry, whether or not to have a child, whether or not to undergo pre-natal testing, and the future health of your child. Given that, I think it is worth looking at each of the types of privacy in a bit more detail to see if we can say that there is something unique about genetic information. First, let us examine the nature of privacy and why genetic information is private. The first thing that must be understood is that all your genetic information is contained in the nucleus of each of your cells.4 All that a geneticist needs is one cell from you to read your genetic code.5 It could be a blood cell-most genetic testing is done with blood cells.6 It could also be hair cells or even saliva.7 Once someone has a drop of your blood, or, perhaps, hair or saliva, they have your DNA from which your genetic code can be extracted. Therefore, we have to think of one drop of blood as a medical record. It is in code, it is a code that has not been broken yet, and it will require sophisticated codebreakers to break it. But the fact remains that it is a complete record of your DNA. You do not have to agree with many boosters of the Genome Project who think it is the Book of Life, that your DNA is going to tell the story of your life.8 I would not get that carried away, but it does contain an enormous amount of information about you and your probable medical future. How should you think about drops of your blood? I was struck by a column written by William Safire during the debate about Senator Packwood and whether his diaries should be made public. Safire argued that diaries are uniquely private and that we keep diaries "to inform our aging selves about our younger selves."9 I thought that was a brilliant insight, and it has its converse in genetic information. …