Position Statements:
Privacy and Confidentiality of Genetic Information: The Role of the Nurse

Brief Statement of Need/Importance

Genetic information refers to any information about a person that identifies inherited traits or characteristics, or genetic alterations that are acquired during a person's lifetime. An increasing amount of genetic information about individuals is becoming available because of genetic advances. While this information has the potential to provide health benefits, it may also increase risk of harm. Of major concern is the potential for misuse of genetic information resulting in any kind of discrimination or stigmatization. Assuring privacy and confidentiality of genetic information demands continued vigilance on the part of all nurses as genetic technologies and discoveries are translated into clinical application and practice.

It is the position of ISONG that a professional nurse should:

• Safeguard a client's right to privacy;
• Adopt into her or his practice, guidelines for ethical practice, identified by the American Nurses Association (1) or the professional codes of conduct pertaining to their own countries regarding privacy and confidentiality, informed consent, truth telling and disclosure, and non-discrimination;
• Become familiar with legislation in their own state or country with regard to the nurse/client relationship, confidentiality of medical information and privileged status;
• Obtain and make a record of a client or their designee's consent prior to releasing genetic information to any third party;
• Understand that family culture, values, traditions, and relationships influence the sharing of genetic information;
• Recognize that each individual in the family is autonomous with respect to genetic matters that may be compromised by the decisions of other family members;
• Collaborate with all other health professionals to assure that clients receive the highest level of genetic health care by:
  1. Advocating for the creation of practice guidelines that assure privacy and confidentiality of genetic information.
  2. Keeping informed regarding legal and ethical issues associated with the use of tissue samples in genetic research.
  3. Educating clients and the public about the various ways in which: a) abandoned tissues and cells might be used as a source of genetic information and; b) genetic information might be used (positively or negatively) by employers or insurance companies.
  4. Becoming aware of the potential for stigmatization and discrimination as a consequence of linking genetic information with ethnicity, race, gender, or other social variables.
  5. Advocating for policies and practices to ensure freedom from unfair discrimination arising from the use of such genetic information.

In addition to the above, it is the position of ISONG that nurses who are prepared at an advanced level be able to integrate knowledge of privacy and confidentiality issues and psychological consequences of the use of genetic information into health care practice.

References:

1. American Nurses Association (2001). Code of ethics for nurses with interpretive statements. Kansas City, Missouri: Author.
2. 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.
3. 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 letter, 11 (3), 7-8.
4. 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.
5. Scanlon, C. & Fibison, W. (1995). Managing Genetic Information: Implications for Nursing Practice. American Nurses Association: Washington, D.C.
6. Secretary's Advisory Committee on Genetic Testing (2000). A public consultation on oversight of genetic tests. Bethesda, MD: National Institutes of Health

Acknowledgements:
This document was drafted by the ISONG Ethics & Social Policy Committee, Chaired by Dale Halsey Lea, RN, MPH, CGC, APNG(c), FAAN. The document, initially approved on October 9, 2001 was amended and approved by the ISONG Board of Directors on August 8, 2005. The views expressed are those of the board and committee and do not necessarily represent the views or judgment of any individual member.

Copyright © 2008, ISONG