Genetics: Changing Healthcare and Changing Nursing

Scientists completed sequencing the human genome over a decade ago, but as Assistant Professor Kathleen Hickey, EdD, FNP, ANP, FAHA, FAAN likes to point out, nurses have been working in genetics long before the genome project began.

“Understanding how disease manifests itself in a family setting, for example, has always been something nurses have been attuned to,” says Hickey, whose term as president of the International Society of Nurse Genetics (ISONG) concludes next month. “With the application of genomics becoming more prevalent in a clinical setting, nurses will be called upon to integrate knowledge of genetics in their care of patients. They will be the ones who will be on the frontlines educating patient’s about their genetic markers for cholesterol or diabetes and providing counseling about what it means.”

In an example taken from her own clinical and research focus in the area of cardiogenetics, a longer than normal period of time for the QT portion of the cardiac electrical conduction system, called Long QT syndrome, may lead to irregularities in the electrical activity of the heart, or arrhythmias. Long QT syndrome can lead to cardiac arrest and sudden death. One subtype of long QT syndrome has been genetically associated with loud or startling sounds, like a loud noise from of a car horn or fireworks. A nurse counseling the parents of a child with this condition might recommend avoiding such triggers and an alarm clock with soft chimes, rather than a loud, persistent ringing or buzzing noise.

“As time goes on and we learn more about the genetic underpinnings of disease, genetics will be increasingly integrated into the delivery of health and wellness care,” she says.

Columbia Nursing is among several leading schools of nursing incorporating genetics into their nurse training programs and providing independent study in the area for interested nurse practitioners. One of Hickey’s accomplishments during her tenure as ISONG president was to promote the essential genetic competencies for nursing created by ISONG and to be actively engaged in the blueprint for nursing in genetics and genomics.

“As care providers step up to help patients and families understand and adapt to diseases that have a genetic component, it is important that nurses master the essential understanding and know-how to conduct core tasks, such as a three generation family pedigree, and how to communicate genetic risk appropriately.”

Also under Hickey’s watch, ISONG continued its focus on supporting and disseminating nursing research in human genetics. Hickey’s interest in genetic research was sparked while she was working in cardiac electrophysiology as a nurse practitioner and earning her doctoral degree in applied physiology at Columbia University. Serving as a nurse practitioner at NewYork-Presbyterian Hospital she noticed that some of her patients experienced high rates of sudden cardiac death within their families.

“When I saw young individuals in their 30s having sudden cardiac death, I began to suspect that genetics was playing a role,” Hickey remembers. “I would ask them about their family history, and a light seemed to go off in their minds. They’d say something like, ‘Yes, I’ve had five uncles who died before they were 50.’” Hickey was the first recipient of Columbia Nursing’s Outstanding Young Investigator Award in 2007, and was selected to attend the National Institute of Nursing Research’s Summer Genetic Institute in 2009 to gain a deeper understanding of the application of genetics as it relates to her focus in area of cardiac electrophysiology. Named as a RWJF Nurse Faculty Scholar in 2009, she conducted innovative research on cardiac genetic mutations that may predispose individuals to a higher possibility of cardiac arrhythmias. Initial findings of the research will be presented next month at the ISONG annual meeting.

Currently, Hickey is pioneering how mobile technology can be adapted to improve patient care. She is investigating an app that fits onto an iPhone that records heart rhythms and electronically sends them to care providers. In this way, patients experiencing silent and symptomatic arrhythmias can be quickly identified and given assistance.

The genetic revolution has also enthused nurse scientists who have joined their physician colleagues in generating evidence-based knowledge that improves health and healthcare. ISONG provides a professional home to nurses conducting investigations into all areas of health, from quality-of-life to epigenetics, as well as how genes influence depression, anxiety and behavior. Hickey has used her presidency of ISONG to raise awareness of the critical research, education and clinical practice conducted by genetically trained nurse scientists.

“Genetics is an incredibly powerful tool,” says Hickey. “It is changing healthcare and it is changing nursing.”