After the sequencing of the human genome, scientists discovered that the order of nearly all (99.9%) nucleotide bases is exactly the same in all people.1 A very small proportion of our genetic makeup accounts for differences, yet the expression of a difference can create major obstacles in many aspects of our daily lives, including health status.
With this information in mind, the U.S. Senate passed H.R. 493, the Genetic Information Nondiscrimination Act of 2007 (GINA), with a 95 to 0 vote this past April. The act is designed to protect Americans against discrimination based on their genetic information when it comes to health insurance and employment.1
Easy Access
The completion in 2003 of the Human Genome Project (HGP) seemingly legitimized assumptions about differences in the human response to illness, including the ability to avoid illness. Scientists now have the capability to detect numerous potentially life-threatening and more common debilitating diseases long before an individual exhibits the first signs and symptoms. Likewise, pharmacologic interventions can now be tailored to target distinctive genetic markers within a specific racial or ethnic group.
The redirection to private industry of responsibility to develop genetic technologies has generated a proliferation of new tests and services that are affordable for the average person. Genetic information once reserved for students, researchers, and experts is now readily accessible via the Internet in user-friendly interactive formats.
Q&A
Although the knowledge and technology to possibly prevent disease or improve morbidity and mortality for certain disorders are available, will individuals take advantage of the opportunity? Do people want to know what conditions they are primed for and might have in the future? What will this type of information mean in their daily lives? Finally, what does GINA mean for practice?
From the beginning of the HGP, researchers and officials rightfully expressed concern about ethical, legal, and social issues arising from data gathered during the HGP. Organizers recognized the need to stimulate dialogue and research addressing these issues because the possibility of misuse or abuse and misdirection or disclosure, intentional or unintentional, of individual genetic profiles was real. The purpose of GINA is to prohibit discrimination on the basis of genetic information with respect to health insurance and employment.2 Sponsors of the bill purport the notion that federal legislation establishing a national and uniform basic standard is necessary to fully protect the public from discrimination and allay their concerns about the potential for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies.2
Positive Implications
Implications of GINA are clear for NPs and other advanced practice clinicians. Genetic information is incorporated in nursing curricula to ensure the basic competencies of graduates at all levels. As you collect the family history and construct a genogram, assess risks for genetic disorders and direct patients accordingly. When H. R. 493 becomes law, you will be able to reassure your patients who elect to have genetic testing that they are protected from discrimination by employers and health insurers who might try to discriminate against them based on predictive genetic information. Give your patients every advantage toward a healthier existence-scientific discoveries are meaningless if they cannot be fully integrated in the practice arena.
Jamesetta Newland, APRN, BC, FNP, FAANP, FNAP, PhD
Editor-in-Chief
References