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Expand the Pool of Genetic Service Workforce by Reaching Out to School Nurses to
Determine Their Needs and Gaps and Develop and Provide Education and Training
Problem/Needs Statement
In 2003, the Human Genome Project, an international scientific research project whose primary
goal was to identify, map and sequence the 20,000 – 25,000 genes in the human genome, was
completed, thereby allowing scientists to be able to read the complete genetic blueprint for a
human being (National Human Genome Research Institute, 2010a). With the completion of the
Human Genome Project, genetic research has expanded to include the field of genomics which is
the study of all of the genes in the human genome together as well as their interactions with each
other, the environment and the influence of cultural and psychosocial factors (National Human
Genome Research Institute, 2010b). Results of genomic research studies are leading to new
advances in the screening, diagnosis, treatment and prevention of both rare and common disease,
and a new era of healthcare, called personalized medicine. As noted by the National Human
Genome Research Institute, “personalized medicine has the potential to transform healthcare
through earlier diagnosis, more effective prevention and treatment of disease, and avoidance of
drug side effects” (National Human Genome Research Institute, 2011).
Many healthcare professionals, including nurses, have not received up-to-date genetic and
genomic education. There is a great need for nurses to be educated in genetics and genomics so
that they can provide personalized healthcare and genetic-related services. Educating school
nurses in genetics and genomics and their applications to healthcare will meet priority 3 of the
RC with the goal to “expand the pool of the genetic service workforce by determining needs and
gaps across sectors to provide education and training, with emphasis on allied health providers, other
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subspecialties and educators.” Expanding the pool of genetic service workforce by educating school
nurses and nurses in school-based health centers along with other allied health professionals will help
to improve, expand, and strengthen access to a system of genetic services and the quality of those
services to improve health outcomes for children, youth and adults across their life course.
Incorporating family history collection, genetic screening and testing into nursing and healthcare
practice can help to minimize disease-associated morbidity and mortality. Furthermore, nurses
and other healthcare professionals can partner with genetics professionals to make sure that their
patients will benefit from the advances in genetic and genomic science (March of Dimes, 2011).
Background, Goals, Objectives and Methods
School nurses serve an important role in caring for children and young adults who have genetic
conditions. They are in a unique role to provide these services to a population of youth and their
families both with and without special health care needs as there is the potential for daily
nurse/child/family interactions. In New England, school nurses are currently involved with
children and young adults with genetic conditions on an individual basis, both to promote and
maintain their existing health during the school day, and to assist them in making the transition
from pediatric to adulthood health care. According to Healthy People 2020, there is a gap in
access to health care resources for youth with special health care needs during their childhood
and as they transition into adulthood (U.S. Department of Health and Human Services (2010).
The provision and further expansion of genetic and genomic education will provide school
nurses with more tools to promote health the health maintenance of a large population of
children and adolescents in New England who attend school.
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School nurses also work in school-based health clinics and are in a primary position to help
identify those children who may be at increased risk for a genetic condition and provide their
families with information about clinical genetic services. School nurses will also increasingly be
involved with personalized medicine.
The overall goal of this proposal is to expand the pool of genetic service workforce by educating
school nurses and nurses in school-based health centers about genetic and genomic healthcare.
To achieve this goal we will determine whether school nurses, including those in school-based
clinics in the New England states of Maine, New Hampshire, Vermont, Massachusetts, and
Rhode Island have had any previous genetics training/education in the past; whether they are
now using genetic and genomic information tools such as collection of family history and
technologies in their practice; how they prefer to receive genetics training and education; and
their confidence in providing genetic-related health services. Once this information has been
collected from school nurses, then appropriate genetic and genomic educational materials and
resources can be put together for school nurses and genetic and genomic educational sessions can
be developed and provided to school nurses throughout New England.
Genetics and Genomics Survey of School Nurses in New England
I. School nurse associations in each of the New England states will be contacted in the summer
of 2012 and requested to send out a letter of invitation to participate and the survey questionnaire
via e-mail or Listserv to their members. School-based health clinic nurses, including those nurses
in HRSA school-based health clinics in Maine, Massachusetts and Connecticut that were granted
funding by HRSA in December 2011 (U.S. Department of Health and Human Services,
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http://www.hhs.gov/news/press/2011pres/12/20111208a_grantees.html) will also be invited to
participate in the survey.
II. The surveys will be reviewed and summarized and given to the NEGC staff for their review.
Based on the results of the survey, Carol Orton and Dale Lea will develop a listing of appropriate
genetics and genomics educational materials including the NEGC web site on information about
conditions. These resources will be distributed to school nurses through the state school nurses
associations and to nurses working in school-based health clinics. They will also arrange for
genetics and genomics educational sessions in the summer of 2013 for each of the New England
States’ School Nurses Associations.
Dissemination of genetics and genomics information: Education for the school nurse
I. Carol Orton and Dale Lea plan to attend the August 2012 Symposium for School Nurses in
New England to present on genetic and genomic topics. They will request that the school nurses
attending will complete a paper version of the survey and hand it in to Carol and Dale before the
end of the Symposium. These nurses will be informed that the survey will be sent out via e-mail
or Listserv to all other school nurses in the New England States in the fall of 2012.
II. All the HRSA-funded school based health clinic nurses in the New England Region (5) will
be contacted directly by Carol Orton and Dale Lea for the purpose of arranging in-services on
genetics and genomic education. The education sessions will be offered to provide the school
nurses within these clinics with the latest evidence based research on genetics and genomics for
direct use in their practice of caring for youth with genetic conditions in the school setting.
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To evaluate the effectiveness of the educational materials and sessions, Carol and Dale will
develop a follow-up survey to learn how school nurses and nurses at school-health clinics are
now using genetics and genomics in their daily practice and whether the genetic and genomic
resources and educational sessions have helped them to expand genetics and genomics in their
clinical practice. The follow-up survey will be sent out in the summer of 2014 to school nurses in
the New England states. School nurse associations in each of the New England States will be
asked to distribute the follow-up survey via e-mail and Listserv with results to be sent to Carol
and Dale. Results of this follow-up survey will be collected and summarized and presented to
the NEGC. Based on the results, additional genetics and genomics educational initiatives will be
considered for the school nurses to meet their needs.
Furthermore, results of these surveys can be used to develop an appropriate approach to provide
genetic and genomic education to other allied healthcare professionals such as nutritionists,
occupational and physical therapists providers . Contacting, surveying, and educating these
healthcare professionals by accessing their organizations, as proposed for the school nurses will be
the focus of year 4 and year 5.
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References
March of Dimes (2011). Genetics and Your Practice. Retrieved on January 4, 2012 from
http://www.marchofdimes.com/gyponline/index.bm2
National Human Genome Research Institute (2010a), All About the Human Genome Project.
Retrieved on January 4, 2012 from http://www.genome.gov/10001772
National Human Genome Research Institute (2010b). Frequently Asked Questions about Genetic
and Genomic Science. Retrieved on January 4
, 2012 from http://www.genome.gov/19016904.
National Human Genome Research Institute (2011).Genetics, Genomics and Patient
Management. Retrieved on January 4, 2012 from http://www.genome.gov/27527600
U.S. Department of Health and Human Services. (2011). HRSA Affordable Care Act support for
school-based health centers will create jobs, increase access to care for thousands of
children.
Retrieved from http://www.hhs.gov/news/press/2011pres/12/20111208a.html
U.S. Department of Health and Human Services (2011). HRSA School-Based Health Center
Grantees. Retrieved on January 4, 2012 from
http://www.hhs.gov/news/press/2011pres/12/20111208a_grantees.html
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Timeline for Proposed Project
Year 1 – June 1, 2012 – May 31, 2013
June – July 2012

Get in touch with the State School Nurses Associations in New England to invite them to
distribute the survey to their nursing members

Get in touch with the school-based health clinics in New England and ask them to distribute
the survey to the nurses working in their school-based health clinics

Develop the letter of invitation to participate in the survey and the survey to be distributed to
school nurses in the New England states
August 2012

Carol Orton and Dale Lea to attend the Symposium for School Nurses in New England and
present on the application of genetics and genomics to healthcare and the role of the
nurse in providing genetic and genomic healthcare
September – November 2012

the survey will be sent out via e-mail or Listserv to all school nurses in the New England
States in the fall of 2012
December 2012

Summarize the survey results and share them with NEGC staff

Develop a listing of genetics and genomics clinical and educational resources for school
nurses.
January 2013 – March 2013
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
Send out the list of genetics and genomics clinical and educational resources to the School
Nurses Associations to distribute to the school nurses in their state

Send out the list of genetics and genomics clinical and educational resources to the school
health clinic nurses

Set up dates with State School Nurses Associations to do genetics and genomics
presentations to school nurses

Set up dates with School –based health clinics to come and do a genetics and genomics
presentation to nurses in the clinic
Year 2 – June 1, 2013 – May 31, 2014

Conduct genetics and genomics presentations to New England School Nurses Associations at
their designated meetings

Conduct genetics and genomics presentations to nurses working in school-based health
clinics in New England

Develop a follow-up survey to assess the usefulness of the genetic and genomic resources
and educational sessions and assess how the school nurses have integrated genetics and
genomics into their practice
Year 3 – June 1, 2014 – May 31, 2015

Send out the follow-up survey in the summer of 2014 to school nurses in the New
England states. School nurse associations in each of the New England States will be
asked to distribute the follow-up survey via e-mail and Listserv with results to be sent to
Carol and Dale.

Summarize the results of the follow-up survey and present the results to the NEGC staff.
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
Based on the survey results, create a plan for developing additional genetics and
genomics educational initiatives for New England school nurses.
Budget and Justification
Salary for Year One – June 1, 2012 – May 31, 2012
Dale Lea – 4 hours a week at $60/hour.
Carol Orton – 4 hours a week at $60/hour
Justification – The time will be used to 1) develop the survey, 2)contact the School Nurses
Associations in New England to arrange for them to send out the survey to school nurses in their
Association, 3) collection of the surveys and summarization of the results, 4) gathering together
and developing genetics and genomics educational materials and resources for school nurses 5)
Travel
Travel to St. Anselms, Goffstown, Hampshire – Annual School Nurse Symposium in August
2012 –
Carol Orton – 50 miles roundtrip @ $0.55/mile
Dale Lea – 200 miles roundtrip @ $0.55/mile
Phone Expenses - $0.29/minute for calls to State Nurses Associations and School-based health
clinics = 720 minutes = $208.80 or $104.40 each for Carol Orton and Dale Lea
Total Budget for Year I =
Salary for Year 2 – June 1, 2013 – May 31, 2014
Dale Lea – 10 hours/state(6)+school based health clinic(5) @ $60/hour
Carol Orton –10 hours/state(6)+school based health clinic(5) @ $60/hour
Travel to each state in New England to do genetics and genomics educational presentations to
nurses attending State Nurses Association annual meetings –
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Carol Orton - 200 miles roundtrip for each state @ $0.55/mile
Dale Lea – 300 miles roundtrip for each state @$0.55/mile
Justification
Providing genetic and genomic educational sessions to school nurses in New England, and
creating a arranging follow-up survey to be distributed after providing the school nurses with
educational materials and sessions.
Total Budget for Year 2 =
Overall Budget =