Allyn McConkie-Rosell
Professor in Pediatrics

Genetic risk communication in childhood, Genetic Testing in Children, Fragile X Syndrome, and Genetic Counseling
One of the major objectives of genetic counseling is to facilitate adaptive coping through interventions designed to provide families with the knowledge, skills, and resilient self-beliefs required to cope, adjust, and affect control over their lives. How to accomplish these objectives when the focus is on children is not as clear. Additionally, just as children grow and change so does the meaning and utilization of the genetic information for both the child and the family. Although there has been some exploration of preferences of when to inform about genetic risk and to offer carrier testing there is limited information on how information is communicated to children within a family. There is also very limited information on what adolescents and young people think about being informed and manner in which they were informed about genetic risk. The concern for children related to genetic risk should not focus solely on if genetic testing should be offered to children, but should also include the effect of genetic risk knowledge itself on children and their perceptions of their family. Because communication patterns from childhood may persist into adulthood and may affect coping and adjustment it is imperative that strategies are developed to aid in the communication of genetic risk information to children. In order to develop effective communication patterns it is important to explore children’s experiences of genetic risk information. The focus of our research is exploring the effect of genetic risk information on children from families with fragile X syndrome.

Current Appointments & Affiliations

Contact Information

  • Box 103857 DUMC, Durham, NC 27710
  • Room 2081, Gsrbi, 595 Lasalle Street, Durham, NC 27710

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