Privacy and Confidentiality in the Age of Genetic Engineering

By Poste, George | Texas Review of Law & Politics, Fall 1999 | Go to article overview

Privacy and Confidentiality in the Age of Genetic Engineering


Poste, George, Texas Review of Law & Politics


This session might be better entitled Privacy and Confidentiality in the Age of Genetic Engineering. The omission of the word "confidentiality" reflects the trend, at least in popular usage, to blur the distinction between two concepts that have very different meanings under the law. Many of the issues in which privacy is tentatively claimed are, in fact, issues that relate to confidentiality.

As Judge Bork stated, this is a remarkable time in the life sciences in terms of the speed of advances in genetic technologies and in terms of their analytical power.1 They are matched with equal power by changes in computing, making an essential technological binary engine of genetics and computing. Furthermore, at the research level the advances in computing enable us to move information in much more voluminous proportions and disseminate it ever more rapidly. These technological engines are moving more rapidly than our present medical and social practices and are outstripping the current regulatory and legislative frameworks for oversight and control.

I think it is also a valid generalization to say that more heat than light has been generated in the debate so far on this topic, in large measure because of the discussants' failure to distinguish between different applications of genetics that carry varying ethical, legal, and social implications. The unqualified use of the phrase "genetic testing," without a prefix, contaminates all forms of analytical endeavor. Some of these applications simply represent the logical expression of medical practice, but others carry quite profound legal and ethical implications. A failure in a semantic sense, let alone in a legislative sense, to make these fundamental distinctions, has already catalyzed poor legislation at the state level.2 These undoubtedly well-intentioned efforts to offer privacy protections have resulted in imprecisely worded legislation that handicaps research and may, in the future, impede the optimal delivery of health care.

I would like to highlight five areas where better and more stringent definitions of functional boundaries are needed to direct oversight in the area of emerging medicine. My first point concerns genetic testing used for diagnosis. A medical intervention to detect whether a disease exists in a given individual poses entirely different privacy risks than predictive testing for future disease risk. As we have seen from the predominant emphasis in the media, to the makers of films such as Gattaca3 and the new growth industry of bioethics, all the focus is quite appropriately on potential abuses and risks associated with predictive testing rather than diagnosis. Though such concerns undoubtedly have a legitimate intellectual foundation, it is important to realize, as Professor Annas has said, that many of these tests are still not feasible for many of the most common human diseases.4 The use of genetics in the diagnosis of existing disease should be far less controversial. As Judge Ginsburg said, this is a logical expansion of the inexorable process of new medical technologies, and, indeed, such data do enter the medical record.5 However, the lines become functionally blurred where a diagnostic test generates data that bear upon a future disease risk. The ability to simultaneously annotate the whole human genome at the point of a legitimate clinical intervention raises, as others have indicated, important issues about informed consent and the scope of the data to be collected.6

Fox example, I may present myself for a single test for cardiovascular disease, but at the same time the annotated genetic data can bear upon a whole series of other risks, some apparent and some real.7 The testing I undergo for the cardiovascular concern, also called monoplex testing,8 introduces an entirely different level of complexity to the informed consent process than does the reading of my entire genome, or what is called multiplex testing. An additional concern is how that additional data, secondary to the reason for which I sought the medical treatment, will actually be archived. …

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