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Genomic Nursing State of Science Draft 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:
  • Gaps in the research recommendations.
  • Ways in which the research recommendations could be clarified.
  • Other potential interdisciplinary collaborations to include.

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


Comments (18) :

  • Chris Kasper (August 16, 2012, 02:01)

    Would like to suggest the inclusion of research initiatives in the emerging areas of genotoxicity of metals and epigenetic effects of battlefield toxicants. Both of these areas of research are rapidly expanding due to the introduction of new technology as well as international conflicts.

  • Allison Vorderstrasse (August 15, 2012, 20:55)

    Thank you for addressing this great need.
    I had a few comments/additions:
    Under the area of Common Chronic Conditions, I would highlight the need to explore clinical and personal utility of risk factors/counseling including genomic risk testing. This is also an area where environmental factors are highly influential as you have acknowledged, so possibly areas such as nutrigenomics and epigenetics would be included in that area as well.
    Under the area of client self-management, it seems that effective interventions to support self-management would also be highly relevant. Along those lines I would add to the interdisciplinary collaborators in terms of health coaches, nutritionists, and others in behavioral medicine/integrative medicine who are so active in this area of research and practice.

  • Elizabeth Ness (August 10, 2012, 14:36)

    I would like to echo other reviewers? comments about the hard work that the group has put in to developing this draft research agenda. One thing that seems to be missing and not sure if it falls under capacity building, but there is nothing about the knowledge or assessing the knowledge that research nurse coordinators need to have related to genetics/genomics that is beyond what the "average" nurse needs to have. This is particularly important given that many clinical research studies have some type of genomic component to them as either a primary or secondary objectives and many of these studies have nurses functioning as study coordinators whose role is to reinforce the informed consent process as well as obtain samples and ultimately provide patient education. Thank you for the opportunity to comment.

  • Lisa Aiello-Laws (August 8, 2012, 18:26)

    Thank you for your hard work. This is an important document to structure the future.

    I have a few comments. These issues may be more specific within the categories than you want to add, but I think they are important.

    1.In order to increase compliance with assessing family history, would we want to develop, or decide on, a specific tool as the recommended tool that can be used in EMRs and other computer systems? To ease and expedite the providers' usage.

    2. I think psychosocial should be its own category. With the lack of parity in mental health care, this area is often ignored. This can include client issues, community issues, as well as nursing attitudes and beliefs.

    3. Within research and curriculum, I agree that we need to follow up/research if genetics/genomics is being integrated, and its' effectiveness.

    4.Increase genetic/genomic content in licensure exams and renewals. This would include professional boards.

    5. When you state 'vendors' for point of care decision support, are you referring to companies that develop and manage this type of software? They should be included.


    Thanks.

  • Janet K. Williams (August 6, 2012, 15:54)

    Congratulations on a comprehensive and targeted document. The fit of the recommendations with the NINR Strategic plan is clear and provides a solid framework for future genomic nursing scholars. I would urge you to include ethics as a prominent component of the recommendation, particularly for Innovation, Technology Development, a) Disclosure of whole genome sequencing data. These data will come as a surprise to individuals, and may have unanticipated implications for individuals and their family members. Decisions and practices regarding what and how to disclose all will be stronger when nurses, ethicists, as well as other disciplinary partners investigate these issues.
    I would also urge you to consider making patient outcomes a prominent component across the recommendations. Outcomes of nursing research and practice ultimately should be reflected in whether individual, family, community, and societal health are protected or well managed.
    Finally, partners not mentioned, who will facilitate these efforts include epidemiologists in the section on Innovation, Environmental influences, and policy makers when there are issues related to state nursing practice acts, certification standards, nursing accreditation standards, and ethicists throughout the document when there are potential risks or benefits to application of genomic discoveries to human health.

  • Anonymous (August 3, 2012, 09:36)

    can we include ethnophamacology

  • Anonymous (August 1, 2012, 18:23)

    Where are the nurses, friends?

  • Linda Ward (August 1, 2012, 17:43)

    I echo the appreciation expressed by others for the good work of the Advisory Panel and offer the following comments and suggestions.
    1. I am pleased to see education and capacity building included in these research recommendations. Although educational research is not directly client focused, the translation of genome science to beside interventions will fail unless nurses achieve a certain level of genomic literacy and competency. ?What? nurses need to know has been delineated in essential competencies, and now effective educational strategies with measurable outcomes must be implemented and tested in both academic and practice settings. Education specialists, particularly in STEM disciplines, and experts in statistics or psychometrics would be helpful collaborators in developing optimal educational strategies and measuring outcomes.
    Suggested changes: In the main category of Innovation, under Education, include optimal methods to educate nursing students as well as the existing nursing workforce and nursing leadership, and include educational specialists and psychometrics experts as collaborators.
    2. I agree with Dr. Daack-Hirsch?s view of the underutilization of nurses in genetic/genomic risk assessment and care delivery--particularly communication and decision support. If we are to maximize the utilization of professional nurses, then we need to demonstrate the effectiveness of nurse-delivered care. Some services, e.g., eliciting and documenting family history, may be effectively and cost efficiently performed by RNs, while other services (e.g., interpreting a family history or communicating genetic test results) may be better suited to advanced practice nurses. In all cases, research is needed to demonstrate the safety, effectiveness, and cost-efficiency of nurse-delivered genetic/genomic interventions.
    Suggested changes: In relevant areas throughout the document, include as a research topic nurse-delivered models of care. These seem fitting in a number of areas, including (but not limited to) risk assessment and communication of risk information, informed consent, and communication of genetic test results, both for DTC testing and other testing (e.g., newborn screening results).
    3. Under Innovation?Technology Development, I wonder why disclosure of whole genome sequencing data is singled out. It seems that research regarding the disclosure of all types of genetic information is needed.

  • Anonymous (August 1, 2012, 17:38)

    I was pleased and proud to see such deep thinking and forward looking plans for nursing research in the area of Genomic Nursing. As I read the "Potential Interdisciplinary Collaborators" section I expected to see Nurses mentioned specifically. Inasmuch as this was developed from a nursing perspective, I expect nurses are assumed to be in this group. However, I think it would be helpful to include the nursing profession explicitly.

  • Rosemary Clement (August 1, 2012, 11:05)

    Dear Genomic Nursing State of the Science Advisory Panel,

    I applaud your draft proposal for genomic nursing reseach priorities. Having just completed my doctoral project in assessing the role advanced practice nurse navigators can play in hereditary cancer risk assessment,(HBOC specifically), I would like to see more reseach on the role of the nurse navigator incorporating hereditary cancer risk assessments in their practice. Practice settings for these types of cancer navigators may vary. I work out of a women's mammography and imaging center and am present when the patient receives her/his biopsy results. Positioning an initial hereditary risk assessment early in the patient's cancer diagnosis, impacted surgical decision making in my study.

  • Berni Coleman (July 20, 2012, 22:43)

    I commend the framers of this document for taking on this laudable charge which, is needed to move the science and its translation forward. I've read the comments of others and agree with the recommendations put forth. The document is well organized and clearly explicates the domains of interest and provides a framework for responsible parties. I offer a few suggestions:
    1. To promote the translation of genetics and genomics in hospital setting, the addition of hospital administrators as stakeholders and collaborators in this endeavor would be most useful.
    2. Consider approaching nurse administrators through their national organization such as ANOE provide the needed knowledge regarding translating genetics and genomics into nursing practice. Any change in nursing practice within the context of the hospital setting will have fiscal impact. 3. Building Capacity: Develop a current plan for on-going education focusing upon practicing nurses with an interest in genetics and genomics.


  • Sandy Daack-Hirsch (July 18, 2012, 14:22)

    I would like to commend the committee for such a strong document and thank you for your dedication to issues related to nursing education, research and practice in genetics and genomics.

    One global research, education, and practice topic is the under utilization of nurses in genetic and genomic risk assessment and delivery of genetic and genomic information. We all talk about the need to include genetics in curriculum, get our practicing colleagues up to date, and to conduct research on various genetic and genomic related topics and we?ve been talking about this for 20 years. However, when we go to our primary care provider whether that is a physician or NP we witness a gross under utilization of the RN staff especially BSN prepared nurses. We can do all this work to get everyone up to speed but still face the challenge of not utilizing a team approach to the delivery of care. I often hear from my physician and NP colleagues that taking a family history takes too much time maybe if the RN staff was more involved this activity could be done. I also read studies on the provider-patient communication regarding genetic and genomic information and all too often the physician is the only provider that is looked in the delivery dynamic. My point is that if we are going to get our nursing work force in academics and practice up to speed on genetics and genomic, we also need to address work place issues that limit nurses abilities to practice and apply this knowledge, and we need studies that demonstrate that when nurse are involved pt-provider communication is improved which leads to better outcomes.

    Some specific recommendations
    1. Every time communication is mentioned in the topic area an appropriate collaborator is someone from the health communication discipline. These colleagues are often in schools or colleges of public health and may also be found in communication or journalism programs. Along those same lines colleagues in public health may be more or at least as appropriate collaborators as social workers especially in community based research or a community or population is the target of an assessment of intervention rather than an individual or family. We are also forgetting sociologist as important collaborators and I?m thinking specifically in research related to social networking related to intergenerational communication.

    2. Research related to health disparities important collaborators are health economist, public health, and social anthropology.

    3. Client self management important collaborators are registered dieticians and colleagues in leisure and activity studies.

    4. Need for clarification
    a. In common complex diseases what does balance of genetic and environmental factors mean? Is someone going to balance these, would we like to understand the balance so as to shed light on what happens when they are not balanced?
    b. In common complex diseases interventions know to be effective, my questions is effective at or for what?

    5. suggestions for additions
    a. in the main category of communication add studies that address who the provider is and look at provider teams and provider mix in assessment and the provision of information
    b. In the main category of Innovation for advancing quality of life add studies that address optimal consent procedures and communication of results, including incidental findings, related specifically to biorepositories.
    c. In the main category of Innovation for technology development, it seems odd that disclosure related WGS is only there under technology. The act of disclosing maybe almost fully computer technology driven, but we should also address the human interaction specifically issues related to return of research results including incidental finings related to WGS, public perspectives on who should disclose and how results should be communicated.

    6. In capacity building add studies that address optimizing all nurses? ability to fully practice within their scope of practice to perform genetic assessment and provide genetic and genomic information to pts.

  • Nancy Downing (July 18, 2012, 12:44)

    I believe the recommendations inadvertently led some to believe nursing was left out of potential interdisciplinary collaborators. However, I think the intent was that these would be the collaborators who would potentially interact WITH the nurses. Nurses are the implied actors in these recommendations.

    A few items are not clear. Under Health Promotion and Disease Prevention, Risk Assessment item Ci, what does decision behavioral outcomes mean?

    Under Advancing the Quality of Life, Family, there should be some acknowlegement of how to address issues related to scope of genetic and genomic information--a proband is genetically related to other family members. what are the issues and responsibilities toward extended family.

    Management of genomic incidental findings could appear under Health Promotion and Disease Prevention, Risk Assessment. I don't see them addressed.

    Thank you for this great work. This sets a foundation for nursing clinicians and researchers on which to build.


  • I.J.S (July 17, 2012, 14:49)

    Potential Interdisciplinary Collaboration should include nurses especially advance practice nurses in clinical practice, education and or research, nursing organizations,specifically ISONG(International Society of Nurses in Genetics) NBNA (National Black Nurses Association)

    Recommendations for Topic Areas should include non-traditional family styles,how to engage "fictive Kin"in improving genetic health literacy of the family

  • Gwen Latendresse (July 17, 2012, 12:51)

    This is an excellent start to planning strategies, goals, and priorities related to genomics and nursing. Thank-you for putting so much work into this.
    I have a two suggestions for additions.
    1. Under decision support (Health Promotion and Disease Prevention)it is important to add two more dimensions under effects on decision-making, as follows
    iv. racial, ethnic, cultural influences
    v. economic/cost/access to care barriers

    2) Under capacity building (Innovation) it is important to address the need for preparation of nurse scientists to participate in and lead interdisciplinary research teams, including the development of expertise in technological advances in testing, pathophysiology, linkages between the environment and health outcomes, i.e. epigenetics.
    Thanks again for your work on this.

  • Kenneth Wysocki (July 17, 2012, 11:57)

    With respect, was nursing represented in this task force?
    Nurse Practitioners and nurses are integral to the health care system.
    Nurses provide the bulk of direct patient health care education.
    Nurses are not represented in this strategic plan and should be at all levels.
    Nurse Practitioners are reported to be the bulk of primary care providers in the next couple of decades and should be included at ALL levels of this strategic plan where ?physicians? are mentioned.
    Further, Nurse Executive groups should be included under Focus on context/Innovation/Environmental Influence.
    And, Nurse Informatics Specialists should be included under Focus on context/Innovation/Informatic Support Systems

  • Helen Gordon (July 16, 2012, 16:35)

    Several articles present ideas and strategies as to why nursing faculty do not incorporate material into courses. Of a recent review of the literature there is not a substantative research focus on what faculty say....as to why they do not include the material and how this can be overcome. Yes, I know many initiatives have been undertaken. But yet, is still seems like integration is slow. Just a gap I have noticed.

  • Anonymous (July 16, 2012, 10:51)

    Nurse practitioners are potential interdisciplinary collaborators that should be included in the activities that identify physicians, pharmacists, genetic counselors and physician assistants. Similarly Psychiatric CNSs should be included in activities in which psychiatrists, psychologists and social workers are identified.

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Last Updated: August 16, 2012