Patients are faced with a complex process when deciding to disclose genetic test results to their family members, as reported in a study published in the Journal of Nursing Scholarship.

"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 the University 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.

SOURCE:
Journal of Nursing Scholarship, June 2005