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ABSTRACT INFORMATION
Title: 'The Family Experience of Genetic Testing'
Track: 7 - Family Perspectives and Support
Keyword(s): genetics, parent perspective, system development
Learning Objectives:
  1. The purpose of this presentation is to explore the family experience of genetic testing. Family stories and experiences will be presented to illustrate how families define and manage the ethical and social issues that emerge during genetic testing.

Abstract:

Genetic testing is increasingly being recognized as both a family and an individual experience. There is growing recognition among clinicians and researchers that families influence and are influenced by how individual family members make sense of, respond to, and use the information they receive during the genetic testing experience. The decision whether to undergo genetic testing can be a litmus test, by which family members perceive and judge each others' loyalty to the family—to its beliefs, values, and rules. To date, few researchers have used a family perspective to examine how families respond to genetic testing. Researchers interested in the genetic testing experience have typically used an individual perspective to examine topics such as attitudes and knowledge about genetic testing, rates of genetic test acceptance, psychological and behavioral consequences of genetic testing, and the disclosure of genetic information to others. Most of the published studies on genetics and the family are epidemiologic studies that focus on molecular biology and the collection of biologic data; they typically do not focus on the family as a social unit that influences and is influenced by the genetic testing experience. In addition, they seldom focus on the complex ethical and social issues that individuals and families encounter during the genetic testing experience. The purpose of this presentation is to explore the family experience of genetic testing. Family stories and experiences will be presented to illustrate how families define and manage the ethical and social issues that emerge during genetic testing. We anticipate that this information will be helpful to states wishing to revise or pursue implementing genetic testing within their EHDI systems.
Presentation: 1288JanetDesGeorges.pdf

Handouts: Handout is not Available
PRESENTER(S) / AUTHOR(S) INFORMATION
Molly Martzke - Primary Presenter,Co-Presenter
Hands & Voices
     Credentials: N/A
      Molly lives in Green Bay, Wisconsin with her husband Paul and three children, 2 sons and a daughter. Her oldest son and youngest daughter are deaf. Molly is the Conference Coordinator for Hands & Voices HQ and responsible for all planning and logistics for the H&V Leadership Conference. She currently shares her dedication to parent support by serving on the NCHAM Parent Advisory Committee and as a Consumer Task Force Member for Genetic Alliance. She has served as Co-Chair of the Center for Disease Control's Parent-to-Parent Committee, developing parent materials for national use. She has presented at national, state and local conferences. She is passionate for parent-to-parent support, newborn hearing screening, and comprehensive information dissemination.
      ASHA DISCLOSURE:

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.
Janet DesGeorges - Co-Presenter
Hands & Voices, Headquarters
     Credentials: N/A
      Janet DesGeorges lives in Boulder, Colorado and is mom to Sara, who is hard of hearing. She is a co-founder of Hands & Voices, serving as the Executive Director since September 2011, and as the E.D. of the Flagship chapter of Hands & Voices in Colorado for 10 years prior to that. Ms. DesGeorges is the author on the chapter for Family Support in the NCHAM e-Book, the co-author of the book Educational Advocacy for Students who are Deaf and Hard of Hearing: The Hands & Voices Guidebook, and many other publications. Ms. DesGeorges received a program certificate from the MCH Public Health Leadership Institute in 2011 at the University of North Carolina – Chapel Hill. Her areas of interest include Leadership Development for parents; Early Hearing Detection and Intervention Systems; Parent/Professional partnerships in Quality Improvement processes.
      ASHA DISCLOSURE:

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.