Drexel’s Ellen Giarelli was named the International Society of Nurses in Genetics Liaison for the National Advisory Council for Human Genome Research, National Institutes of Health, as announced in a University press release Jan. 12.
Giarelli, currently an associate professor in the College of Nursing and Health Professions, also serves as the president of the International Society of Nurses in Genetics, a global nursing organization that promotes the “scientific growth of nurses in human genetics.”
By joining the NACHGR, she will be part of an organization that has advised the U.S. Department of Health and Human Services and the National Institutes of Health on issues related to the human genome initiative. The council performs peer reviews for grant applications relating to this initiative and is represented by liaisons from outside organizations, including the American Society of Human Genetics and the Genetic Alliance.
“This position is important symbolically and practically, [as] I am one of only five liaisons from professional organizations, and I am the only nurse on the Council,” Giarelli said.
The Council, which is comprised of 25 members, identifies the priorities for the National Institutes of Health and advises the government’s efforts in the International Human Genome Project.
As ISONG Liaison, Giarelli will represent the interests of the Council’s members, which include “incorporating the principles of human genetics into all levels of nursing education and advancing nursing research in human genetics,” among others.
“The ISONG vision is caring for people’s genetic and genomic health. My main role will be to monitor the activities of the NHGRI as they relate to ISONG’s goals,” Giarelli said.
Other goals of the group include encouraging the development of standards of practice of nurses in human genetics and promoting integration of the nursing process into delivering genetic healthcare services.
Giarelli has worked in cancer and autism genetics, dealing with the scientific component of both the disease and the disorder.
“My research and careerlong scholarship has been to study the lifelong experiences of people with genetic disorders diagnosed in childhood,” she said. “The disorders are chronic, have variable expression over a lifetime and often require those who are diagnosed to watch and wait for symptoms.”
“As scientists sponsored by the NHGRI learn more about genetic contributions to health and illness, nurses and other health care providers will need to understand the patients’ and families’ perspectives and experiences in order to teach and treat their patients,” she continued.
Giarelli will officially begin as liaison at the Council’s first meeting of 2012 in Rockville, Md., which will take place Feb. 13-14. The upcoming meeting will be the Council’s 64th and will focus on providing stakeholders in genetics with the opportunity to share ideas and expectations, Giarelli said.
“Attendees can comment on such items as large-scale genetic sequencing programs, human heredity and health in Africa,” she explained. “These meetings are the forum for public input as well as an [opportunity] for free and open exchange among scientists, health care providers and public health advocates, as well as the general public.”
She continued, “I hope to be the voice of nurses, our patients and their families in the council’s discussions.”