Ethical Issues in Genetic Testing

Dale Halsey Lea, RN, MPH; Janet Williams, RN, PhD; M. Patricia Donahue, RN, PhD


J Midwifery Womens Health. 2005;50(3):234-240. 

In This Article

Challenges for Midwives and Perinatal Clincians

Women's health care clinicians are becoming increasingly aware of applications of recent genomic advances. Inclusion of a genetic family history in every patient's care is becoming part of standard primary care. However, there remain many questions about the applications of genomic information to health care. Two areas that are most likely to have an impact on the practice of clinicians today are 1) assessment of reproductive risk by testing for common inherited conditions such as cystic fibrosis and sickle cell anemia, and 2) prediction of risk for adult-onset conditions with a known genetic component such as hereditary breast/ovarian cancer based on family history and/or genetic testing.[16,26] These tests provide information about the odds of having a gene mutation or the presence of an inherited disease in one's offspring. This information can be difficult to explain and difficult to interpret. Increased options in prenatal diagnostic tests are a third area that will impact the practice of midwives. As newer techniques, such as microarray technology, become used in prenatal testing, it is anticipated that many more genetic conditions can be tested for. However, the testing may involve diagnosis of serious developmental problems for which there is no treatment, either in utero or after birth. Midwives may become involved with genetic testing for conditions such as asthma, diabetes, heart disease, and Alzheimer's disease. In addition, genetic testing will increasingly be available to identify individual variations that predict drug responses and side effect profiles.[27] Application of ethical principles is one component of advocacy for women's health that midwives must rely on as they guide their patients through decisions created by new options for genetic testing.

Clinicians must be involved in considering ethical questions associated with any genetic tests. As stated in the Hastings Center report:


Most experts who are speaking of this revolution are referring to a revolution of biotechnology and information science that would make medicine even more highly technological than it is today. While this may come to pass … genetics also has the potential—paradoxically—to reinforce humanistic, empathic, and communicative aspects of clinical care. Clinicians will conceivably become more aware of their patients' values and more aware of the family, religious, and social structures within which their patients live their still very unpredictable lives. Genetics will revolutionize medicine. It will send it back to its roots; back to its future. [28]



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