18th ANNUAL EARLY HEARING DETECTION & INTERVENTION MEETING
March 3-5, 2019 • Chicago, IL
4/14/2014 | 2:00 PM - 2:30 PM | The Family Experience of Genetic Testing | Grand Ballroom 8 | 7
The Family Experience of Genetic Testing
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.
- 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.
Presentation:
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Transcripts:
CART transcripts are NOT YET available, but will be posted shortly after the conference
Presenters/Authors
Molly Martzke
(Primary Presenter,Co-Presenter), Hands & Voices, mpmartzke@yahoo.com;
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 -
Nonfinancial -
Stephanie Olson
(Co-Presenter), Children's Hospital Colorado, stephanie.olson@childrenscolorado.org;
Stephanie Olson, B.A., is the Family Consultant for the Bill Daniels Center for Children’s Hearing at Children’s Hospital, Colorado. Stephanie has been in this position for 18 years and serves as a liaison between families and the audiology health care system. Previously she worked with families and children from birth to three through the Colorado Home Intervention Program and for Hands and Voices Headquarters.
Stephanie has traveled to Northern China, London, South Africa, Brazil and New Zealand and St. Petersburg, Russia, and FCEI Austria- Family Centered Early Intervention in 2012, 2014, 2016, 2018 and 2022. Stephanie’s passion is to increase the understanding and impact of deaf and hard of hearing individuals in the parenting journey and with the professionals who work with those families. Stephanie was identified deaf/hard of hearing at the age of three and brings a variety of perspectives into her work and presentations.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exist.
Nonfinancial -
No relevant nonfinancial relationship exist.