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NIH Apr 7, 1994 | R01
A Predictive Testing Program for P53 Mutations in LFS
Institution: Dana-Farber Cancer Institute
FOA Number: N/A
Abstract
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. We will assess their understanding of genetic information, and will provide extensive genetic counseling regarding relevant choices and their implications through the process. We will explore with them the readiness of subjects who are parents and prospective parents to enter their at-risk children into a predictive testing program were it to exist, and what features of such a program might be important to families. We will also assess the receptiveness of the population to advice regarding disease surveillance and risk avoidance. We will conduct this program with full cognizance of the complex ethical and social issues which are inextricable from this work.
FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
R01Project Number:
R01HG000725Start Date:
Apr 7, 1994End Date:
Mar 31, 1997PROJECT TERMS:
cancer risk, clinical chemistry, Ethics, family genetics, Gene Expression, gene mutation, Genetic Counseling, Genetic Polymorphism, human genetic material tag, human subject, Interview, neoplasm /cancer genetics, Oncogenes, psychological adaptation, Questionnaires, tumor suppressor genes