PROJECT NARRATIVE More efficient ways for people to make decisions about having genetic testing are needed. We will compare use of a chatbot to standard genetic counseling in helping healthy adults in a primary care setting make informed choices. If similar, this intervention can expand access to genetic testing to achieve greater equity.
PROJECT NARRATIVE At least 15% of children with cancer have an underlying genetic cause of their cancer, requiring significant counseling regarding therapy modifications, cancer surveillance, and lifestyle changes for both the patient and their family. There is a shortage of qualified genetic counselors available to meet with these families, especially in the stressful setting of cancer diagnosis.
Project Narrative The potential benefits and harms of returning genomic results to children and their parents are matters of enduring controversy?especially genomic results for adult-onset conditions that are not medically actionable in childhood. Empirical data to support either position in this controversy are, however, lacking.
Requires health benefit plans to cover any genetic test for cancer risk recommended by a physician, physician's assistant, genetic counselor or nurse if the recommendation is consistent with genetic testing guidelines of the National Comprehensive Cancer Network.
Requires health benefit plans to cover any genetic test for cancer risk recommended by a physician, physician's assistant, genetic counselor or nurse if the recommendation is consistent with genetic testing guidelines of the National Comprehensive Cancer Network. Signed by the Governor on May 19, 2019. Effective January 1, 2020. Bill Status: Enacted
This pilot project will invite adult members of classic and variant Li-Fraumeni families at 50% risk of carrying an altered p53 gene to participate in a program in which they could be made aware of their p53 status. We will assess the expectations and motivations of at-risk adults and their partners for participation in a program of predictive testing. We will explore their psychological preparedness to participate, and, after disclosure of results, will evaluate the impact of the knowledge of their p53 status on their psychological well-being and family relationships.
This study will develop, implement and evaluate a model informed consent (IC) process for genetic testing for breast cancer that integrates the perceptions of consumers and providers. The model IC process will address both content and style of disclosure and counseling. The study will develop and utilize surveys of providers and consumers to determine the knowledge, expectations and perceptions of both groups of genetic testing for breast cancer.
This study will test two protocols for providing effective and culturally-sensitive pre-BRCA1 test education to first-degree relatives (FDRs) of breast and ovarian cancer patients. The two protocols are: Standard Education that addresses the benefits, limitations, and risks of testing, and (2) Education plus Counseling that also addresses the psychosocial aspects of alternate testing decisions.