Genomic Nursing State of Science Research Recommendations

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


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Genomic Nursing State of Science Research Recommendations

Public Comment Solicitation Announcement

The Genomic Nursing State of the Science Advisory Panel is requesting public comments on draft research recommendations arising from an invitational workshop held on June 8, 2012 at the National Institutes of Health (NIH) for the purposes of finalizing genomics nursing research priorities. The overall purpose of the Genomic Nursing State of the Science Initiative is to:

  1. Review and evaluate the available evidence on genetics/genomics competency and nursing practice.
  2. Establish a research agenda based on a systematic evaluation of the current state of the science.

The Genomic Nursing State of the Science Advisory Panel consisted of two coordinators and eleven invited individuals from the interdisciplinary community who were selected based on their expertise in genomics, nursing workforce issues, nursing research, system change, health services measurement, and evidence based synthesis. Advisory Panel members represented practice environments, academics, under-represented population and interdisciplinary groups, as well as various federal agencies. Existing evidence from a systematic evidence review, testimony from key stakeholder groups, and presentations from experts in research synthesis all were considered by the Advisory Panel.

The draft research agenda focuses on the client and the context. Client encompasses the individual, family, community, population. Context refers to informatics support systems, capacity building, education, and environmental influences. Draft research recommendations target interventions likely to improve clinical, economic, and environmental outcomes from any care setting and representing diverse populations.

These draft research recommendations are an independent recommendation of the Advisory Panel and are not a policy statement of the National Institutes of Health or the Federal Government. The Advisory Panel recommended solicitation of public comment on the draft research priorities to assure that the final recommendations are comprehensive and reflective of priorities relevant to nursing. Each comment will be considered for incorporation into the final research recommendations by the Advisory Panel.

During the 30-day comment period, the Advisory Panel is requesting comments on:

Draft Research Agenda

Genomic Nursing State of the Science Advisory Panel Draft Research Recommendations Mapped to NINR Strategic Plan Areas with Potential Interdisciplinary Collaborations Identified

NINR Strategic Plan Areas Specific Research Categories Advisory Panel Research Recommendations:
Topic Areas
Potential Interdisciplinary Collaborations
Focus on Client
Health Promotion and Disease Prevention Risk Assessment a.Consider comprehensive screening opportunities for family history
    i.Identify those at elevated risk but not recognized or referred (i.e., red flags)
    ii.Identify those not at elevated risk
b.Components of risk assessment
    i.History taking
    ii.Interpretation of risk information
c.Risk specific healthcare decision-making
    i.Decision behavioral outcomes
d.Risk communication-individual, family, communities
e.Cultural influences
f.Costs
Epidemiologists, Genetic Counselors, Physicians, Physician Assistants, Psychologists, Psychiatrists, Social Workers
Communication a.Communication of risk information (i.e., risk reports) b.Interpretation of risk
c.When to provide information (i.e., timing)
d.Cultural influences
Genetic Counselors, Physicians, Physician Assistants, Psychologists, Psychiatrists, Social Workers, Sociologists
Decision Support a.Informed consent b.Consistency of values c.Literacy/numeracy
d.Risk perception
e.Effects on decision-making
    i.Knowledge
    ii.Benefits/risks
    iii.Personal values
Ethicists, Genetic Counselors, Physicians, Physician Assistants, Psychologists, Psychiatrists, Social Workers
Health Disparities a.Racial, ethnic and cultural influences on disease occurrence and response to treatment
b.Diseases that disproportionately affect minority groups
c.Targeted therapeutics
Genetic Counselors, Pharmacists, Physicians, Physician Assistants, Psychologists, Psychiatrists, Social Workers
Advancing the Quality of Life Family a.Healthcare provider communication
b.Family rules, boundaries, decision-making
c.Psychosocial domain
d.Ethical issues
e.Numeracy
Family Scientists, Genetic Counselors, Physicians, Physician Assistants, Psychologists, Psychiatrists, Social Workers
Pharmacogenomics a.Communication
b.Education
c.Knowledge
d.Decision-making
Genetic Counselors, Pharmacists, Physicians, Physician Assistants, Psychologists, Psychiatrists, Social Workers
Common Complex Diseases a.Nursing interventions that reduce morbidity and mortality
b.Balance of genetic and environmental factors
c.Interventions known to be effective
Genetic Counselors, Pharmacists, Physicians, Physician Assistants, Psychologists, Psychiatrists, Social Workers
Client Self Management a.Role in collecting information (i.e., family history)
b.Genetic literacy, knowledge, attitudes
c.Risk perception
d.What do persons do with genomic information?
e.Decision-making
f.Communication
g.Lifestyle behavior choices
h.What the patient expectations are of the healthcare provider and what they should provide to allow patient centered practice
Genetic Counselors, Pharmacists, Physicians, Physician Assistants, Psychologists, Psychiatrists, Social Workers
Innovation Biorepositories a.Explanations
b.Cultural factors influencing participation
Genetic Counselors, Physicians, Physician Assistants, Psychologists, Psychiatrists, Social Workers
Health Disparities a.Public trust in nursing to facilitate:
    i. Communication
    ii. Education on the relevance of genomics for the client/family
b.Economics
c.Access to care
Genetic Counselors, Pharmacists, Physicians, Physician Assistants, Psychologists, Psychiatrists, Social Workers
Direct to Consumer Marketing and Testing a.What clients do with the test information
b.Interpretation of test results
Genetic Counselors, Pharmacists, Physicians, Physician Assistants, Psychologists, Psychiatrists, Social Workers
Technology Development a.Disclosure of whole genome sequencing data (i.e., multidisciplinary and family centered data) Genetic Counselors, Pharmacists, Physicians, Physician Assistants, Psychologists, Psychiatrists, Social Workers
Focus on Context
Innovation Informatic Support Systems a.Documentation to facilitate research outcome assessments and clinical care
b.Communication methodologies to improve cross generational sharing of genomic data (i.e., family history)
c.Capture genomic test information (i.e., sequencing data)
d.Point of care provider decision support
Education Specialists, Informatics Specialists, Policy Makers, Vendors
Capacity Building a.Training future nursing genomic scientists
b.Preparing nursing faculty
Genetic Counselors, Pharmacists, Physicians, Physician Assistants, Psychologists, Psychiatrists, Social Workers
Education a.Optimal methods to train the existing nursing workforce
b.Overcoming misinformation and genomic "Myths"
c.Optimal methods to train the nursing leadership to support genomic translation
Genetic Counselors, Pharmacists, Physicians, Physician Assistants, Psychologists, Psychiatrists, Social Workers
Environmental Influences a. Evidence based guideline development
b. Healthcare reform
c. Economics
Economists, Federal Agencies, Policy Makers, Professional Organizations, Researchers
 

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Last Updated: February 26, 2013