"Individuals who have a family history of a particular disease such as breast cancer or Huntington's disease can now have a genetic test that will tell them if they, specifically, are at risk for that disease," states lead researcher Rebekah J. Hamilton, RN, PhD, of theUniversity of Iowa. Hamilton looked at the decision making process of 29 participants, what and how they chose to disclose to family members, as well as the effects of test results. Knowing present or potential risk for children and being able to make plans for the future were cited as additional benefits of testing.
"Some evidence from this study indicated that cliques form in families composed of those who test positive for a mutation," said Hamilton. Further research is needed to explore family dynamics over time after test results have been disclosed.
Researchers found that the type of disease, as well as the individuals' perceived need to prepare, influenced the timing of disclosure to family members. Some were selective in the information they revealed as well as with whom they shared the information.
Hamilton reports that even when family members are in agreement about having testing, receiving a positive result can have significant consequences on family connections. The data could influence clinical practice regarding genetic testing and what or how to discuss findings with family members.
This study is published in the Journal of Nursing Scholarship. Media wishing to receive a PDF of the article please contact medicalnews@bos.blackwellpublishing.net. Lead author Rebekah J. Hamilton, PhD, RN is a Post-doctoral Clinical Genetics Nursing Research Fellow at the College of Nursing, University of Iowa and will be an Assistant Professor at the University of Pittsburg in August 2005. Co-researchers include Barbara J. Bowers, RN, PhD, FAAN of the University of Wisconsin-Madison and the Australian Catholic University-National, Melbourne, Australia and Janet K. Williams, RN, PhD, FAAN, also of the University of Iowa. Rebekah Hamilton is available for questions and interviews and can be reached at rebekah-hamilton@uiowa.edu.
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Journal of Nursing Scholarship