Position Statement:
Genetic Counseling for Vulnerable Populations: The Role of Nursing
Approved: October 10, 2002
Background
The explosion of genetic discoveries resulting from human genome research is
creating new medical and nursing practice roles and expanding health opportunities for clients
worldwide. As a result, clients are increasingly seeking genetic information and counseling
services. Nurses will use counseling and case management skills to assist clients in this new
era of genomic-based health care.
Optimum ways to provide genetic counseling is needed to address all clients’
genomic-based health care needs. This is especially important for vulnerable populations.
Several Position Statements provide guidelines for genetic counseling and testing of children
as a vulnerable population (ASHG, 1995; WHO, 1997). The International Society of Nurses in
Genetics, Inc. (ISONG), supports a broader interpretation of vulnerable populations to include:
children, individuals with hearing and language deficits or conditions limiting communication
(for example, language differences and concerns with reliable translation), cognitive
impairment, psychiatric disturbances, persons from minority populations, clients undergoing
stress due to a family situation, those without financial resources; clients with acute or
chronic illness and in end-of-life, and those in whom medication may impair reasoning.
Traditional genetic counseling strategies focus heavily on the exchange of
factual information, a model that may reveal cognitive differences between counselor and client.
Standard of practice for providing genetic information is based on the average person’s needs,
modified by the individual’s needs or desires, as determined through discussion. The intended
result is informed decision-making and a change in knowledge and/or behavior (Finucane, 1998).
Issues of concern to vulnerable clients are likely to be similar to those of other clients;
however the process may differ. When considering genetic counseling with vulnerable
populations, outcomes such as satisfaction of the need for certainty and satisfactory
achievement in the client’s psychological adaptation to the genetic condition/issue in the
family are more appropriately considered and tailored to each specific client situation
(Skirton, 2001).
Genetic counseling is only effective to the extent that it addresses issues of interest and concern to the person being counseled (Wolff and Jung, 1995). For vulnerable populations genetic counseling using a focused discussion is more appropriate to address specific, concrete situations related to the clients’ issues of interest. When providing genetic counseling to a vulnerable client it is preferable to explore a single client-centered need or concern than to complete an agenda of standard activities that may have little meaning to the client. For example, a detailed discussion of probability concepts and comparative risks may not be useful for the client with cognitive impairment, chronic pain or side effects from medications. A vulnerable client may not necessarily comprehend the concept of probability or the intricacies of DNA analysis that would lead to competent understanding of the implications of the genetic condition. Still, this client may be able to make informed decisions about gene-based diagnostics and/or therapeutics.
Nurses in all practice settings care for vulnerable clients and populations with
genetic-related health concerns, and share with other team members the responsibility to ensure
that optimum and appropriate genetic counseling is made available. This can be accomplished
through nursing participation in the genetic counseling process, wherein counseling methods and
outcomes have been tailored to most directly and efficiently address client-centered goals of
persons from vulnerable populations.
Genetic Counseling of Vulnerable Populations: The Role of Nursing
The International Code of Ethics for Nurses (ICN, 2000) states that all nurses
ensure that the individual receives sufficient information on which to base consent for care and
related treatment. This includes the right to be given accurate, complete and understandable
information in a manner that facilitates an informed judgment; to be assisted with weighing the
benefits, burdens, and available options in their treatment, including the choice not to pursue
treatment (ANA, 2001). Nursing support of this right includes the opportunity for the individual
to make decisions together with family and significant others and access to advice and support
from knowledgeable nurses and other health professionals. Nursing responsibility may extend,
with the client’s consent, to communication with other health or social care professionals on
behalf of or in conjunction with the client, to ensure that the client’s needs are met. The ICN
Code of Ethics for Nurses further addresses the nurse’s responsibility (shared with society) for
initiating and supporting action to meet the health and social needs of the public, including
those of vulnerable populations. In particular, as advocates and caregivers of vulnerable
clients, nurses promote provision of genetic counseling with a focus on genetic issues of
concern to the client and that includes family and/or legal guardian when needed.
Nurses in all practice settings have a role in delivery of genetics services to
vulnerable populations. The International Society of Nurses in Genetics, Inc. (ISONG) recognizes
in genetics nursing practice, the focus of is on providing nursing care to all clients who have
a known genetic condition, who are at risk to develop a genetic condition, or have children with
genetic conditions. Comprehensive genetics nursing practice involves interpersonal relationships
between the client and nurse. It is a dynamic process that involves interdisciplinary
collaboration with genetics professionals and other health care professionals in order to serve
the shared mission of assisting clients, including vulnerable clients, in reaching their
self-defined outcomes. The genetics nurse identifies expected outcomes that are individualized
to the client. Expected outcomes are formulated by the nurse and client together, and are
realistic in relation to the client’s present and potential capabilities and interests.
At the basic practice level, nurses advocate for the vulnerable client by
facilitating access to genetics resources; and providing or reinforcing information about a
genetic condition/concern. At this level, nurses advocate for and support vulnerable clients by
ensuring that they have access to genetic counseling services that meet the clients’ desired
outcomes. At the advanced practice level and with expanded skills, nurses themselves provide
genetic counseling to vulnerable clients. This includes:
- Assessing vulnerable clients’ physical, cognitive and developmental
levels and expressed interest in genetic information.
- Identifying outcomes that are appropriate to the client’s goals,
selecting interventions, including genetic counseling to achieve these outcomes.
- Evaluating outcomes of the care in collaboration with the client and a
multidisciplinary team.
- Participating and/or conducting nursing research in genetic services.
It is the position of ISONG that professional nurses will:
- Incorporate a broad definition of vulnerable populations receiving genetic
counseling services to include: children; individuals without financial resources; conditions
limiting communication including language differences and concerns with translation from one
language to another, cognitive impairment, persons with psychiatric disturbances; people at end
of life, and persons from minority populations.
- Evaluate the extent to which stress from family situations, acute or
chronic illness, and medications may contribute to a client’s status as a member of a vulnerable
population.
- Advocate for optimum genetic counseling outcomes for vulnerable clients,
including assuring that in situations when language differences are present appropriate and
reliable translation of genetic information is made available to the client.
- Communicate, (after consultation with and consent of the client) with other
health and social care professionals on behalf of or in conjunction with the client to ensure
that the client’s needs are met.
- Adopt into practice, guidelines for ethical practice, as identified by
the International Counsel of Nurses and the American Nurses Association, the patient’s right to
self-determination, and the nurse’s responsibility to meet the health and social needs of
vulnerable populations.
- Understand that formation of a personalized relationship between the client
and genetics staff significantly influences the central outcome of genetic counseling.
- Recognize that important outcomes of genetic counseling for all clients
include:
- a client’s lay knowledge of a genetic condition,
- satisfaction with the need for certainty,
- determination of decisions regarding testing or management with respect to a genetic
condition or risk for a genetic condition, and
- satisfactory achievement in the client’s psychological adaptation to the genetic condition
in the family.
- Incorporate into genetic counseling services for vulnerable populations,
methods to evaluate understanding in the client.
- Participate in and/or initiate research in nursing interventions including
genetic counseling strategies and methods and evaluation of such for vulnerable populations.
References:
- Ad Hoc committee on Genetic Counseling (1975). Report to the American Society of
Human Genetics. American Journal of Human Genetics, 27, 240-242.
- American Nurses Association (2001). Code of ethics for nurses with interpretive
statements. Kansas City, Missouri: Author.
- American Society of Human Genetics (1995). ASHG/ACMG Report: Points to consider:
Ethical, legal and psychosocial implications of genetic testing in children and adolescents.
http://www.faseb.org/genetics/acmg/pol-13.htm
- Skirton, H. (2001). The client’s perspective of genetic counseling – A grounded
theory study. Journal of Genetic Counseling, 19 (4), 311-329.
- Finucane, B. (1998). Working with women who have mental retardation: A genetic
counselor’s guide. Elwyn, Pennsylvania: Elwyn, Inc.
- International Council of Nurses (2000). The ICN code of ethics for nurses. Geneva,
Switzerland: Author.
- International Society of Nurses in Genetics, Inc. (1998). Statement on the scope
and standards of genetics clinical nursing practice. Washington, D.C.: American Nurses
Association.
- International Society of Nurses in Genetics, Inc. (Winter 2000). Position Statement:
Informed decision-making and consent: The role of nursing. International Society of Nurses in
Genetics Newsletter, 11 (3), 7-8.
- National Coalition for Health Professional Education in Genetics (2001). Committee
Report: Recommendations of core competencies in genetics essential for all health professionals.
Genetics in Medicine, 3(2), 155-158.
- Veatch, R.M., & Fry, S.T. (1995). Case studies in nursing ethics. Boston, MA, Jones
and Bartlett Publishers.
- Wolff, G. and Jung, C. (1995). Nondirectiveness and genetic counseling. Journal
of Genetic Counseling, 4, 3-25.
- World Health Organization (Geneva, 15-16 December 1997). Proposed international
guidelines on ethical issues in medical genetics and genetics services: Report of a WHO meeting
on ethical issues in medical genetics.
http://www.who.int/ncd/hgn/hgnethic.htm. Document Reference:
WHO/HGN/GL/ETH/98.1, ENGLISH ONLY.
DHL 10.10.02
Posted on 03/26/03
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