Monday, February 04, 2008

Genetic Information: A new realm of discrimination?

The major topic discussed today in class was the privacy of individual information, and how different companies utilize its disclosure to profit from interested 3rd parties and the like. We mostly discussed companies like Kroger, Marsh, and Facebook which manage personal information mostly for contact, advertisement, and recruiting purposes (Facebook is a useful tool for potential employers seeking information on their applicants). All these businesses rely on information one puts on an application, or a profile, meaning that the user still exercises control of the information disclosed. However, what would be the modern day consequences be if information was available that an individual had no control over? More specifically, genetic information. I'm not meaning to be coy or far fetched with this blog post; this is a very controversial and relevant topic in today's realm of Biotechnology. What happens on TV shows, like CSI, is a small and forensic glimpse into the power that genetic information currently holds. What are the regulations and potential repercussions that need to be considered in the disclosure of genetic information? It seems that we are on a potential brink of a new wave of discrimination; from employers, insurance companies, and society in general - based on our genetics.
Nowadays, screening for diseases can be done easily and efficiently on individuals in utero (during pregnancy) and in vitro (externally handled and minimally invasive) per request of the parents or individual, respectively. Detection of genetic diseases and predispositions can be known long before the disease has its onset, yet gives the individual valuable information on their future health. Parkinson's, Alzheimer's, breast cancer, and cystic fibrosis are all examples genetic diseases that can be screened for at most major hospitals. Advances in detection methods are made daily - advancing the fields of medicine, forensics, and science in general. Will genetic information be protected and regarded as private information, or will it be disclosed to employers, insurance companies, and schools where it is vital to the profitability and management? Would it be fair for an employer to be informed that an applicant will have Alzheimer's onset during their term with the company? What about a construction company that has a choice of hiring someone who is on a genetic path for Parkinson's? This information is obviously crucial on both ends of an employment contract; but who will profit from its disclosure?
The notion that personal information is generally regarded as property allows companies to enter into 3rd party contracts just like what we discussed in class. If genetic information is regarded as personal property, it opens the door towards this new genre of discrimination. The sad truth is that most people have no control over genetics, as opposed to the control we have over our Facebook profiles. Depending on the legislation, genetic profiles could be regarded as confidential, viewed for insurance and employment purposes, or publicly available upon an individual's discretion. Clearly, a genetically superior individual would be more likely to let employers or insurance companies know his/her profile, whereas an individual with a future cancer onset would be more reluctant. This same debate parallels what was discussed in class today - although I realize Facebook and genetics are two different beasts.
The scientific progress towards more precise methods of genetic fingerprinting is exponential, to say the least. State-of-the art detection equipment is outdated within months, if not weeks (visit the Center for Genomics and Bioinformatics in the Jordan Hall basement and you'll see what I'm talking about, or just browse This poses both great hope and threat for all of us that have some sort of genetic ailment. Yes, easy screening opens a venue towards cures and remedies - but it also opens the door towards simpler testing, thereby easing access to information. I hope that adequate rules and regulations are put into place to moderate disclosure, keeping the job market a fair a non-discriminant system. This controversy seems like science fiction but unfortunately "Gattaca" (the 1997 movie) is a potentially near future. I don't mean to cast a shadow on the future - I am normally an overly optimistic person. However, I believe that information with such potential must be handled with the right hands and extremely carefully.

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Blogger Vic Simianu said...

Just some supplementary notes on this:

GINA: The Genetic Infromation Nondiscrimination Act of 2007 was passed in the House by a vote of 420-3, and is awaiting the Senate's verdict. This act protects individuals (partially) from genetic discrimination from employers and health insurance companies.

You can view the Library of Congress's summary on the issue here:

Here is a fact sheet on the topic of Genetic Discrimination from the National Human Genome Research Institute, a division of the NIH.

1:06 PM  

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