Joanna Fanos, Ph.D.
Email: Joanna.H.Fanos@Dartmouth.EDU
Introduction
My work as a research psychologist focuses on the impact of pediatric chronic illness on the family, especially the well sibling. I have documented the long-term psychosocial effects of growing up with and possibly surviving an affected sibling in such disorders as cystic fibrosis (CF), ataxia-telangiectasia, X-linked severe combined immune deficiency commonly known as the "bubble boy" disease, pediatric HIV, and Familial Amytrophic Lateral Sclerosis (ALS). Recently I have studied Transition Programs (from a Pediatric Physician to an Adult Pulmonologist) for adults with CF.
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Sibling Center
My research has led to my founding and Directing the Sibling Center in the Child Development Center, Department of Pediatrics, a preventive clinical program to help children and adolescents with an ill sibling.
Currently I am studying siblings of individuals with Alpha1-Antitrypsin (AAT) Deficiency. 
In 1996, I wrote a book based on in-depth interviews with adults who grew up with a sibling with CF, titled Sibling Loss,
Lawrence Erlbaum, Mahwah, New Jersey.
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Read the book reviews and publisher's information.
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Publications
Click here for List of publications by Joanna Fanos, PhD in PubMed.
Representative Publications include:
Fanos JH, Fahrner K, Jelveh M, King R, Tejeda D. : The sibling center: a pilot program for siblings of children and adolescents with a serious medical condition. J Pediatr. 2005 Jun;146(6):831-5.
Fanos JH, Strange C.: "The lion, the witch and the wardrobe": impact on sibs of individuals with AAT deficiency. Am J Med Genet A. 2004 Oct 15;130(3):251-7.
Fanos JH, Gelinas DF, Miller RG.: "You have shown me my end": attitudes toward presymptomatic testing for familial amyotrophic lateral sclerosis. Am J Med Genet A. 2004 Sep 1;129(3):248-53.
Fanos J, & Johnson, J. (2001). Genetic Testing and Counseling. In: B. Lask, M. Bluebond-Langner & D. Angst, Psychosocial Aspects of Cystic Fibrosis. Arnold Publishing Company, London.
Fanos JH, Puck JM. Family Pictures: The Impact of Growing Up with a Brother with X-Linked Severe Combined Immunodeficiency. American Journal of Medical Genetics 98:57-63, 2001.
Fanos JH, Davis J, Puck JM. Sib Understanding of Genetics and Attitudes Toward Carrier Testing for X-Linked Severe Combined Immunodeficiency. American Journal of Medical Genetics 98:46-56, 2001.
Fanos JH, Gatti, RA, A Mark on the Arm: Myths of Carrier Status in Sibs of Individuals with Ataxia-Telangiectasia. American Journal of Medical Genetics 86:338-346, 1999
Fanos JH, The Missing Link in Linkage Analysis, The Well Sibling Revisited. Genetic Testing 3(3):273-8.3, (3), 1999
Fanos JH, Mackintosh, M, Never Again Joy Without Sorrow: The Effect on Parents of a Child with Ataxia-Telangiectasia. American Journal of Medical Genetics 87:413-419, 1999
Fanos JH, "My Crooked Vision": The Well Sib Views Ataxia-Telangiectasia. American Journal of Medical Genetics 87:420-425, 1999
Fanos JH. Developmental tasks of childhood and adolescence: implications for genetic testing. American Journal of Medical Genetics 71(1):22-8, 1997.
Fanos J Sibling loss. Mahwah, N.J. : L. Erlbaum Associates, 1996.
Fanos JH, Johnson JP. Perception of carrier status by cystic fibrosis siblings. American Journal of Human Genetics 57(2):431-8, 1995.
Fanos JH, Johnson JP. Barriers to carrier testing for adult cystic fibrosis sibs: the importance of not knowing. American Journal of Medical Genetics 59(1):85-91, 1995.
Fanos JH,Wiener L. Tomorrow's survivors: siblings of human immunodeficiency virus-infected children. Journal of Developmental & Behavioral Pediatrics 15(3):S43-8, 1994.
Wertz DC. Fanos JH. Reilly PR. Genetic testing for children and adolescents. Who decides? JAMA 272(11):875-81, 1994.
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