The Genetic Information Non discrimination Act of 2008, a law designed to prohibit the use of genetic information to discriminate employment and healthcare insurance, was hashed out for thirteen years before arriving into the hands of President George W. Bush and signed into law. (For an introduction and background information from a previous blog click here.) Organization stakeholders included, National Institute of Health, Coalition of Genetic Fairness, National Association of Manufacturers, National Retail Federalization, Society of Human Health Management, United States Chamber of Commerce, bureaucracies and insurance companies. As with any complex matters that affects the dynamics of commerce and society, there are arguments that support as well as against a premise. For instance, if you are positively genetically tested for a precursor to a disease, how could it be a problem for you? Biotechnology companies strive to find genes that are strongly linked to disease and have them patent, blocking others access without infringement. They may have developed the medicine for the disease linked to those genes at an astronomical price, could have a cure but deny you this because it is more profitable to maintain you on the medication(s) that you would depend on, and or they are discriminating to whom they provide it to.
According to the National Human Genome Research Institute, in support of the Genetic Information Nondiscrimination Act of 2008, they advocated that bio-medical research continues to advance particularly for the development of personalized medicine. They believe the legislation will promote confidence in patients availing themselves to genetic diagnostic procedures, thereby providing genetic data necessary for research and clinical practice. (2005) The Coalition for Genetic Fairness is concerned with potential misuse of genetic information and discrimination. And, preceding senator of Maine, Olympia Snowe was an effective force in supporting the passage of the legislation and expressing its importance. Both parties are in support for civil rights and the development of genetic research.
On the contrary, the National Association of Manufacturers, National Retail Federalization, and the Society for Human Resource management, and the United States Chamber of Commerce stated that the legislation is overly general and would inadequately address the issues and that inconsistent state law may result in damages as the legislation would require frivolous administration and technical requirements. Further the insurance industry representatives argued that they would be restricted from needed genetic information and that high risk people would cause rate unfairness. Although, the argument against it is deflecting regulation, it is primarily from financial aspects.
The core of the conflict is profits. For example, the National Institute of Health supports and advocates the advancement of biomedical research which is dependent on the very genetic material itself. Without the core ingredient, projects such as personalized medicine and other avenues of genetic advancement would be stifled and would result in the curtailing or halt of funding.
Similarly, the profit margins and financial statements for the insurance industries and employers and retail sector would be substantially affected. The services and goods as a result of DNA information would be restricted and the potential sales, and revenue lost. Accounting and financial techniques and manipulations that would require information contained in DNA would not able available as a tool for minimizing liabilities and maximizing productivity and income.
Both sides of the parties have power and financial stability, but the complexity arises from the entanglement of disguised stewards and fault of bribery and lobbyists. Power, control and money are fundamentally the epicenter. Clearly, power and money are highly desirable, and philosophically have been the root of evil, the rise and collapse of empires and corruption.
Essentially, this is a debate about having access to power and money at the cost of human rights. This law is designed to protect employees and health insurance members, our society. However, there are loops and powerful entities artillerized with sums of money to and will “payoff” congress and government electives.
NHGRI Director Speaks at Personalized Medicine Briefing (2005, September). Retrieved fromhttp://www.genome.gov/17015194