I just returned from warm and sunny Memphis after attending the 29th Annual Meeting of the National Sickle Cell Disease Program, sponsored by the National Heart, Lung, and Blood Institute of the National Institutes of Health and the local Comprehensive Sickle Cell Center. I attend this annual meeting because sickle cell disease (SCD) is an area of my research interests. The scientific and clinical reports, including discussions on the ethical, legal, and social issues related to genetic screening, were outstanding and energizing. Sickle cell disease has the distinction of being the first molecular disease to be identified, the first molecular disease whose genetic mutation was discovered, and the first genetic disease whose causative gene was isolated. Yet there is still much to be learned about the management of SCD as health professionals and researchers strive to improve the quality of life for affected individuals.
Improving Knowledge
In this genomic age, every health professional must have some knowledge of genetics. In 2005, the National Coalition for Health Professions Education in Genetics (NCHPEG) updated the 2001 core competencies (available at http://www.nchpeg.org/) that were developed through the collaborative efforts of nursing, medicine, and the government.
The document asserts that each healthcare professional should at a minimum be able to: 1) appreciate limitations of his or her genetic expertise; 2) understand the social and psychological implications of genetic services; and 3) know how and when to make a referral to a genetics professional. The competencies are organized into three domains-knowledge, skills, and attitude. Not every competency will apply to every individual.
The NP's Role
Nurse practitioners (NPs) are key members of the team responsible for the care of SCD patients in the hospital and in outpatient settings. They provide direct patient care, monitor patient medications, coordinate education programs for patients and families, implement research protocols, design and conduct research studies, and provide genetic counseling as qualified.
An NP may specialize in genetics in one of several masters and doctoral programs in nursing across the country, but not meet the qualifications to become a certified genetic counselor. The Genetic Nursing Credentialing Commission, a subsidiary of the International Society of Nurses in Genetics, provides recognition for clinical nursing practice in healthcare with a genetics component. Nurses who are prepared with a graduate degree in nursing may qualify for the Advanced Practice Nurse in Genetics credential. Portfolio review is the method of application/credentialing versus examination. A select group of nurses has attained this credential.
Changing Healthcare
The advent of more commercial genetic testing services is changing the way healthcare is provided. Pharmacogenetics addresses the relationship between genes and response to drugs. Because the majority of patients with SCD in the United States are of African descent, two factors-ethnicity and genes-are considerations in the development of new drugs for SCD.
Through research, I have a heightened appreciation of the importance of nurses' knowledge about genetics and agree with the NCHPEG proposal. The debate, however, is on-going about whether advances in genetic science will be equally accessible to all patients. The U. S. Surgeon General's Family History Initiative encourages every citizen to know his or her family's medical history (http://www.hhs.gov/familyhistory/). Make sure you can advocate for your patient's genetic concerns, needs, and rights.