Privacy and Genetic Information

In considering the concept of a “future diary” brought up in section 13 of the Nova program, I agree with Michelle’s concern in her post that the public is largely “gene illiterate” and think it is right to be worried that people we might not want may be able to read a “future diary” that we cannot even read ourselves.  This being said, I think that the only reason that we are “gene illiterate” right now is because this information is still in the process of being translated for us by scientists.   Though the information in public databases right now is indecipherable to the average person, I can certainly imagine that there will be a time when this information becomes standardized to the point where it may be understood by anyone.  We have to keep in mind that access to this genetic information is new and that we have hardly scratched the surface of this technology.   It seems to me that the important issue to ponder is not if the public is destined to remain gene illiterate, but who controls the access to this information when it is available.

Searching around for some more information on this issue, I came across an essay from the California Digital Library which proposed, “It seems likely that either the existence of such decodable information will impel us to take privacy much more seriously in the genetic realm than we have in the medical and criminal realms or it will lead us to give up on maintaining personal privacy altogether.”   As a way of imagining what the compromise of genetic privacy might lead to, this section makes a comparison to Oprah, a show in which information which was once emphasized as private (such as personal sex-life) is revealed in front of a public audience for entertainment.  While we may be desensitized to Oprah or other shows like Jerry Springer, the reason that they thrive is because the information revealed is still considered private to an extent… and because it is private, it is also sensational.  When there does exist decoded genetic information, will it simply become another commodity, or will we begin to “take privacy much more seriously?”

Imagine the passion that would ensue when your x-husband or wife reveals your genetically determined destiny to your current lover

I believe that if we do not begin to take genetic privacy extremely seriously now, genetic information will be subject to this type of debasement.  Protecting genetic information might require looking at it in different ways than currently protected information.  In another essay on this subject, Mark Willis quotes George Annas who says of genetic  information,  “The right not to know may be as important as the right to know.”  I think that this type of thinking which challenges the normal assumptions of information rights is necessary in the coming genetic age.

-John

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~ by johnsaba on January 31, 2010.

One Response to “Privacy and Genetic Information”

  1. I think the main people that you are worried about knowing your genetic code are probably insurance companies. And I sincerely hope you are right that the public takes a genuine interest in understanding and that the scientists take a genuine interest in explaining. You may want to check out GINA (Genetic Information Nondiscrimination Act of 2008), which deals with health care and employment based on one’s genetic code.

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