Future Pundit has an interesting entry today about how he believes Genetic Privacy will be difficult to maintain. Basically, his conclusion borders on nearly impossible:
“The hardest part of the authentication of the identity of the DNA sample submitter would be to verify that the person who submits the sample really is the person whose sample it is. One way to solve that problem would be to require DNA samples be taken from a person in a licensed clinic. Though bribery of clinic workers could defeat such a scheme. Another approach would be to put biometric data in the form of images of irises, fingerprints, and/or other biometric information into the centralized database. Then a person submitting a DNA sample at a clinic could have their eyes or fingers scanned by a remote computer to authenticate their identity as part of the DNA sample submission process.
I still see such an elaborate regulatory system as fairly easy to defeat”.
First, I will preface by stating that I am not an expert on the issue, not even close. However, I would think that the issue of genetic privacy would be more immediate if such information was to be used by independent for profit companies. For example, if my insurance company was to use the information gleaned from genetic testing to determine my premium (Without my permission) I would find that a violation of privacy (As a side note: Life insurance companies conducting genetic testing before acceptance of cliental in inevitable and will probably be standard procedure). Same as if an independent company acquired information of my predisposition towards Parkinson’s disease and attempted to sell me services based on this information. However, laws can be enacted against this kind of commercial information sharing.
If someone (a person) I know attains information about my DNA, by obtaining a sample and sending it to an independent lab, then I believe that to be an unfortunate consequence of an invaluable technology. I can’t see how it differs in any way then what we have today. Personal medical information is protected by law today yet, one’s medical records can easily be accessed by someone working in a medical clinic, a hospital, or a nursing home. In order to obtain someone’s private medical information one would simply bribe a clinic worker, same as the solution suggested in the above entry. The question remains, if the information is not used for the purpose of ultimate profit, of what use it would be?
Of course, companies based off-shore could easily use this information for profit. Such endevours would hardly be difficult and would resemble many that exist today. Thus, they would avoid any legal ramifications of medical privacy that exist in the US.
The most worrisome consequence as I see it is that companies, seeking to create profit, will misinform the public about their true risk of acquiring a condition based on a persons DNA profile. As always, a certain condition is usually a combination of nature and nurture, one's environment combines with genetic predisposition to create disease. The non-medical layperson would not be aware of this and thus would make himself a prime candidate for such unnecessary expenditures.
Update: Future pundit integrated this post into the entry above and answers my question, quite well I may say. so go on over and learn a little something about what's to come, it's a great read.