Mapping of the Human Genome Will Bring New Challenges in Ethical Healthcare Delivery
The announcement that the combined efforts of the United States, European countries, and private corporations produced the first draft of the human genetic blueprint received widespread attention in June, 2000 and February, 2001. Scientists involved in the project made it clear that a detailed understanding of the code for the approximately 30,000 genes located within our chromosomes is still many years away. However, this recent accomplishment and anticipated explosion of knowledge about the molecular foundation of our physical make-up brings with it the promise of new ways to prevent, diagnose, treat, and cure disease. As research techniques increase in sophistication, researchers involved in the Human Genome Project are expected to uncover and release new information regarding the influence of specific genes in disease development at an unprecedented pace. Not only will nurses with a speciality in genetics or practicing within a maternal-child setting be expected to demonstrate an understanding of genetics and genetic disorders, but all nurses in all settings will be expected to understand the ethical and practice implications of genetic testing and treatment. Diagnostic gene chips activated by a drop of blood, gene therapy, and genetically specific drug therapy are just a few examples of the clinical innovations that are expected to be developed and routinely used within the next 10-20 years (Wall Street Journal, July 24, 2000). In light of the impact of this knowledge on our conceptualization of human health, nurses' attention to the moral and ethical implications of identifying the human genetic blueprint and the resulting changes in healthcare delivery cannot be underestimated.
The United States Human Genome Project is the first large research project that is simultaneously studying the ethical, legal, and social issues that arise from such an endeavor. Some of the ethical issues are of primary concern to nurses, such as safeguarding a patient's right to privacy and confidentiality, protecting patients from discrimination in the provision of health care on the basis of genetic make-up, and assisting clients to exercise autonomy in the area of genetic testing and treatment decision-making.
The Code for Nurses provides guidance to the practicing nurse in this new era of genetic knowledge and genetic based healthcare. The Code explicitly addresses two crucial ethical issues involved in this genetic knowledge explosion and directs nurses' practice in the provision of healthcare; respect for human dignity and safeguarding of privacy and confidentiality.
Nurses are to provide "services with respect for human dignity and the uniqueness of the client, unrestricted by considerations of social or economic status, personal attributes, or the nature of health problems" (Code for Nurses, 1985). Nurses recognize that patients have the moral right to determine what will be done with their own bodies and should make autonomous decisions regarding genetic testing or treatment. Educating clients and families regarding the genetic basis of disease and the influence of genes on disease development is necessary in order to facilitate informed decision-making. As the public receives more and more information regarding the genetic basis of disease, nurses will be called upon to answer questions regarding how genetic information may be used to promote health and prevent illness. Nurses also recognize that patients have a universal need for healthcare regardless of their national, ethnic, racial, religious, cultural, political, educational, economic, and sexual differences and therefore should not be discriminated against in the delivery of healthcare on any grounds, including genetic make-up.
Assisting clients with decision-making related to genetic healthcare options makes it necessary for the nurse to safeguard the client's privacy and keep confidential any information regarding the patient's genetic make-up. If a client refuses genetic testing, the nurse supports the client's right to be free from unsolicited testing and to keep confidential from any outside parties, including health professionals, any or all information related to individual genetic make-up. In addition, the right to privacy requires that any tissue samples that are taken for another medical purpose and can be identified and linked to the donor should never be used for genetic diagnostics without the explicit and informed consent of the patient.
If a decision is made by the client to undergo genetic testing, any information revealed through testing should be kept confidential and never released without the fully informed consent of the client. The potential for misuse of genetic information is great, and may result in discrimination in employment or health insurance coverage.
Nurses may look to the American Nurses Association (ANA) and the Center for Ethics and Human Rights to provide leadership in the rapidly expanding world of human genetics. As early as 1996, the ANA, the American Medical Association, and the National Human Genome Research Institute began a national effort to promote health professional education and access to information about advances in human genetics. The National Coalition for Health Professional Education in Genetics (NCHPEG) is a result of this movement (www.nchpeg.org). The Coalition is committed to developing educational tools and information resources to facilitate the integration of genetics into health professional practice and is currently working to develop core competencies in genetics that are essential for all health care professionals. The ANA publication, Managing Genetic Information: Implications for Nursing Practice, 1995 provides further guidance to nurses in managing genetic information.
Nurses in all areas of clinical practice have a responsibility to ensure that patients are educated regarding the implications of genetic diagnosis, risks for genetic based disease, and release of information to outside parties. Within the next decade, the speed with which genetic knowledge will be generated and applied in clinical practice will be unprecedented. During this period of rapidly changing clinical practice, the Code for Nurses and the American Nurses Association are resources that will continue to provide guidance to nurses in the delivery of ethical patient-centered genetic health care.
References:
American Nurses Association (1985). Code for Nurses With Interpretive Statements. Kansas City, MO.
Scanlon, C., & Fibison, W. (1995). Managing Genetic Information Implications for Nursing Practice. Washington, D.C.: American Nurses Publishing.
Wall Street Journal (July 24, 2000). The Genomics Debate: Biotechnology Executives Discuss the Impact of The Genetic Revolution. Page B10.
National Coalition for Health Professional Education in Genetics.
Retrieved July 20, 2000: www.nchpeg.org
Other references and helpful websites:
American Nurses Association and International Society of Nurses in Genetics (1998). Statement on the scope and standards of genetics clinical nursing practice. Washington, D.C.: American Nurses Publishing.
CDC Office of Genetics and Disease Prevention.
Retrieved August 8, 2000: www.cdc.gov/genetics/
Education Programs in Genetics for Nurses
Retrieved July 20, 2000:
nursing.creighton.edu/isong/Education/Courses/Default.htm
Ethical, Legal, and Social Issues (ELSI) of The Human Genome Project
Retrieved July 13, 2000: www.nhgri.nih.gov/ELSI//
International Society of Nurses in Genetics
Retrieved July 20, 2000: nursing.creighton.edu/isong/
The Human Genome Project.
Retrieved July13, 2000: www.nhgri.nih.gov