Many thanks to Kelsey Stuttgen and her colleagues at Johns Hopkins who are researching communicating genetic risk information with minors. For more information, please continue to read her post below:
As some of you might know from experience, talking with kids about cancer and genetic risk information can be difficult to navigate. My name is Kelsey Stuttgen, and I am part of a team at Johns Hopkins that is conducting a research study on whether, when, and how to communica...te with minors about genetic risk information.
The goal is to gather perspectives from parents and genetic counselors who have experience with communicating genetic risk information to children, and the children themselves. This research will be used to provide information to both parents and health professionals on how to navigate the difficult task of communicating genetic risk information to minor children.
We are looking for individuals who are willing to participate in our study. We are looking for parents who either have had a diagnoses of hereditary cancer, or are the spouse of someone living who has had a diagnoses of hereditary cancer, and have a child ages 15-17.
What is involved? Parents and children will be interviewed separately via phone at a time that is convenient for the participant, and interviews will last approximately 30 minutes. Because we will be speaking with children about their perspectives, we are looking for families who have already talked with their kids about risk information. Each parent and child will be compensated $40 for their time.
If you have any questions about the study or are interested in participating, please contact me at firstname.lastname@example.org. Many thanks for your time and consideration!
Genetic counselors are experts in both genetics as well as the psychosocial implications of having a genetic condition. The genetic counselor will sit down with... you and your family and go through the family history, discuss the diagnosis of Turcot syndrome, and help you work through what the diagnosis means for your family. Genetic counselors can help you talk with other family members about the diagnosis. They can also help you identify support resources available to you, and possibly even connect you with other families who are experiencing the same diagnosis. Turcot syndrome is a genetic condition that causes growths called polyps in the intestines and a higher chance of getting brain cancer and/or colon cancer. Spread awareness by sharing! Learn more at http://ow.ly/Lxq930hPiwp CGA Colon Cancer Alliance for Research & Education for Lynch Syndrome - CCARE #turcotsyndrome #raredisease RareConnect #GeneticConditionAwareness