What if the story of your life was written at birth- a “future diary” available for someone to read? The decoding of the human genome over a decade ago held the promise of defying our genetic destiny, but it also foreshadowed some significant ethical issues on the horizon. This month, California legislators addressed some of these concerns in the Genetic Information Privacy Act (SB 1267). The proposed bill would guard against covert DNA testing by requiring written permission from California citizens before collecting, analyzing, storing or sharing their genetic information. Any such data obtained with permission could only be used within the scope of the permission given by the DNA owner, after which the DNA samples would have to be destroyed.
Proponents of genetic privacy laws argue that DNA should be regarded as personal property, warranting the same if not higher level of protections bestowed upon other types of personal information in this category. Such is the stance taken by California State Senator Alex Padilla who authored the proposed bill, “If we think of the lengths we go to protect financial information or credit card numbers, it seems to me that your genetic information is both much more personal and much more valuable than anything else that we currently protect.”
Academics and research scientists, however, are concerned that the effect of this bill would be to impede genetic research that could lead to medical breakthroughs by preventing DNA databases from being reused for different studies. Scientists generally sequence DNA from thousands of individuals to determine the genes associated with particular diseases. Under the proposed bill, a large dataset could not be reused to study a different disease. The University of California wrote a letter to the California legislature, asserting that if researchers are forced to collect new data for each study or track down former DNA donors to obtain consent, it could significantly increase the university's administrative costs of research by up to $594,000 annually.
As in other arenas, technological advancement in the field of genetics has progressed at a faster pace than the legal framework necessary to govern it, so the issue is not whether there should be regulation, but rather to what extent. While the Genetic Information Privacy Act is still in its early stages, related legislation such as the extension of federal protections against genetic discrimination has already passed in California. This is not a field where we can afford to issue broad regulations. For instance, University of California research typically requires genetic information to be identified with numbers rather than names; yet, under SB 1267, consent would also be required for anonymous data. With regards to the existing genetic databases that were compiled prior to the proposed legislation, one potential solution is to grandfather these in so that the consent requirement would only apply to genetic data compilation going forward.
The Hollywood film Gattaca portrays a dystopian future where access to an individual’s “future diary” leads to genetic discrimination. In the movie, an individual’s susceptibilities are mapped out at birth “neurological condition, 60 percent probability; attention deficit disorder, 89 percent probability; heart disorder, 99 percent probability; life expectancy, 30.2 years.” While technological progress may not be close to yielding results at this level, it is crucial to lay the relevant legal framework now.