FAQs
What is genomic medicine?
Genomic medicine refers to the use of an individual's genetic information and family medical history to improve health outcomes. In practice, this may include: the identification of individuals who have an unusually high risk for developing a disease such as cancer, particularly when there is a family history for the disease, the use of preventive measures (such as lifestyle changes, more frequent lab testing) in order to avoid or delay the onset of life-threatening diseases, and the use of genetic tests to identify the best possible treatment for a disease
Among humans, about 0.1% of our genetic information is variable, and these variations are responsible for differences in our physical appearance, our ability to respond to various environmental challenges (such as infection, stress, and food), and our vulnerability to many diseases.
What is the Guilford Genomic Medicine Initiative (GGMI)?
The GGMI is a comprehensive and coordinated program involving four partners: the Moses Cone Health System (MCHS), the Duke University Center for Human Genetics (CHG), and the Center for Biotechnology, Genomics and Health Research (CBGHR) at the University of North Carolina-Greensboro, and the Miami Institute for Human Genomics (MIHG) at the University of Miami, FL. Together, this partnership will introduce a practical and cost-effective genomic medicine program that secures patient privacy. A major portion of the GGMI is devoted toward public and professional education programs to ensure that the information provided through genetic testing is clearly communicated by health professionals and understood by individuals receiving their genetic information.
Who is funding this program, and why?
The GGMI is funded by the Department of Defense, which spends over $15 billion annually for military personnel and retiree healthcare. Genomic medicine is viewed as a promising approach to improve medical practice while reducing the cost of healthcare. Specifically, it has the potential to reduce the costs associated with various common late onset disorders that afflict military retirees. However, the military healthcare system is not an ideal setting to introduce genomic medicine because of its size and geographic range. Guilford County region possesses several attributes that are advantageous for the introduction of genomic medicine. The model that is developed may later be applied to the military system and other health care systems around the globe.
Why is the project being conducted in Guilford County?
Guilford County has numerous features that are favorable for genomic medicine. First, a major portion of the community is served by the Moses Cone Health System, which offers an extraordinary level of healthcare delivered by high-quality professionals. This ensures the highest standards of practice will be maintained as the program is developed. Second, the community is diverse. The program developed through GGMI will be suitable for virtually all individuals, regardless of their genetic identity or origin. Third, the genetic testing program will be developed through Duke University's Center for Human Genetics, one of the world's premiere centers for the identification of genetic risk factors associated with complex human diseases. Just as importantly, the Center has developed protocols and procedures that secure private health and genetic information. Finally, the University of North Carolina-Greensboro has a long tradition of community outreach and education, and will manage the genetics education programs for health professionals and the community.
How long will the initiative last?
The initial phase of the GGMI will last three years and has been approved by the US Congress for funding of up to three years and $10 million. However, the introduction of genomic medicine into the local healthcare system will serve as a foundation for the use of genetic testing in everyday clinical practice.
What immediate benefits will the GGMI bring to healthcare in Guilford County?
In its early phases, the GGMI will provide training for local physicians and the local community, so the public can assess the potential of genomic medicine for themselves. The use of genomic medicine information in healthcare will be rolled out gradually, initiating with three disease applications (please see: Are there any specific diseases that will be the focus of the project?)
Will this project require higher or additional expenses to patients for testing and counseling?
No. In fact, the aim of the project is to implement personalized care, which should reduce the cost of healthcare through disease prevention and more efficient and effective personal treatment.
What are the "hidden costs" of the GGMI?
There are no costs or subsidies required from other sources, including the Moses Cone Health System, and therefore, no costs which will be passed on to patients.
Will the project involve human cloning?
No
How will genetic testing be used to improve my care?
The genetic tests utilized in the program will be used solely to determine a person's risk for a disorder, to assist in the diagnosis of a disorder, and/or to determine the best treatment for a disorder. Moreover, the tests will be performed only when medical indications or family history suggest a patient may benefit.
How will my right to privacy be protected?
Recent Federal regulations protect the privacy of genetic information and state laws protect patients from insurance discrimination based upon genetic test results. In addition, patients' rights, including privacy, will be protected in at least two other important ways. First, all patients approached by their health care provider about genomic medicine strategies that may improve their care will be advised of the steps necessary for them to protect their interests prior to genetic testing. Secondly, the GGMI will be advised by both internal and external advisory boards that include internationally recognized experts in areas of medical law, social sciences, public health, education, and ethics.
Are there any specific diseases the project will focus on?
The program will initially focus on genetic risk factors associated with three diseases: breast/ovarian cancer, colon cancer, and thrombosis (blood clotting).
About 5-10% of breast cancers are caused by a gene variant (a mutation) in either one of two genes (known as BRCA1 and BRCA2). If a patient has one or more blood-related relatives (such as a parent, brother/sister) who developed breast or ovarian cancer, especially at an early age, a genetic test may determine whether they have an unusually high risk for developing breast or ovarian cancer. Such “at risk” individuals would be counseled regarding options available to them to minimize their risk and monitor health status.
The lifetime risk for colon cancer in the general population is about 7%, and almost one- third of all cases are associated with a family history of colon cancer. Many of these cases involve a variant in one of two genes (known as APC and HNPCC). A patient who carries one of these mutations has an especially high risk for developing colon cancer. The monitoring of individuals with a family medical history of colon cancer would typically begin at an earlier age than for the general population with the aim of reducing the risk of disease onset.
Genetic testing will also be available for patients who display some of the indications of a genetically based risk for thrombosis (blood clotting). Each of the two known genetic variants responsible for elevated risk of thrombosis are fairly common (greater than 1%) in the human population. The factors that suggest the need for testing include a family history of thrombosis, the occurrence of thrombosis before age 50, and recurring thrombosis. Thrombosis has potentially dangerous and life-threatening consequences, including early heart attack or stroke. For individuals who are genetically at risk, early detection indicates the need for simple preventive measures, such as the prescription of a blood thinner. As the project progresses other genomic medicine applications will be included as proper infrastructure and education are implemented.
What are the long-range benefits of the project to Guilford County citizens?
The completion of the Human Genome Project represents only the first phase of a revolution in healthcare that will increasingly rely on genetic testing, preventive treatments, and health maintenance. Through the introduction of genomic medicine, the community's citizens will be among the first in the world to receive personalized medicine based on their genetic information. Moreover, as a pioneer program, the community will provide a logical setting for the development of new healthcare practices and technologies. As such, the community will be attractive to high-technology and health industries thus contributing to the economic development of the community.
How can I contribute to the GGMI?
There are many components to the project, and, therefore, more than one way to contribute. The first phase of the project is dedicated primarily to education of the public and health care professionals about genomic medicine. In order to meet the interests and needs of the community, we will require input from community members prior to developing and implementing educational programs. If this is something you would like to be involved in, please visit our website regularly. Additional information concerning specific opportunities will be posted on this web site and announced through the media.
As genomic medicine itself is implemented into clinical care of patients, opportunities to utilize genetic information in your healthcare will become more frequent. Based on discussion with your healthcare provider, together you can decide whether this approach is right for you. At this time, it is anticipated that the clinical portion of the GGMI project will begin in early 2005, although a small number of applications are already in use.
No one in my family suffers from a genetic disorder. Is there any value in the project for me?
Many of us are familiar with inherited genetic disorders, such as cystic fibrosis and sickle cell anemia, but these represent only a small portion of the diseases now recognized to have some genetic basis. It is now recognized that susceptibility to almost all human illnesses have a genetic component, including common disorders such as heart disease and Alzheimer disease. Even without a family history it is possible for an individual to carry gene(s), which predispose them to a disorder. Knowing that a person carries a gene variant that increases their risk to develop a disorder it may be possible to prevent or minimize the effects of the disease through preventive care, customized treatments and/or lifestyle choices. In addition, information about genetic variations, even those that may not contribute to the cause of the disorder, may give physicians clues about the best treatment for a disorder, thus making care more efficient and cost effective.
