A Systematized review of experiences of individuals in Arnett’s emerging adulthood stage who live with or are at-risk for genetic conditions

Anna Rae Shelley, Patricia McCarthy Veach, Bonnie LeRoy, Krista Redlinger-Grosse

Research output: Contribution to journalArticlepeer-review


Emerging adulthood, a distinct developmental period between ages 18 and 29 years, comprises five features: identity exploration, experimentation/possibilities, negativity/instability regarding one's outlook, self-focus, and feeling in-between adolescence and adulthood. A growing literature examines the impact of genetic conditions on individuals who chronologically fit the emerging adulthood period. This systematized literature review uses the emerging adulthood theory to determine whether individuals living with or at-risk for a genetic condition experience the features of this period as well as similarities and differences between these two groups. A literature search yielded 1,303 peer-reviewed papers from the 17 years since emerging adulthood theory was published. Ten papers met inclusion criteria—five for those Living With a genetic condition (e.g., cystic fibrosis) and five for those At-Risk for a genetic condition (e.g., hereditary breast and ovarian cancer). Content analysis yielded themes consistent with the five emerging adulthood features for both individuals Living With and At-Risk for genetic conditions. Negativity/instability was most prevalent, and feeling in-between was least prevalent in both groups. Results further suggest unique challenges related to one's genetic conditions/risk with respect to independence (from family, healthcare providers), career/education, relationships/social life, family planning, and life perspective experiences. Salient differences were apparent between the groups in their experiences of the emerging adulthood features. For instance, Living With individuals reported challenges concerning their ongoing physical symptoms, whereas At-Risk individuals reported challenges regarding genetic testing decisions and anticipation of physical symptoms. Thus, emerging adults Living With and At-Risk for genetic conditions appear to experience the main emerging adulthood features, but they face unique challenges related to their genetic conditions/risk. Understanding emerging adults’ experiences can aid genetic counselors in addressing their specific concerns.

Original languageEnglish (US)
Pages (from-to)1059-1080
Number of pages22
JournalJournal of Genetic Counseling
Issue number6
StatePublished - Dec 2020

Bibliographical note

Funding Information:
Dr. Melanie Myers served as Action Editor on the manuscript review process and publication decision. The authors would like to thank Lauren Douglas for her assistance in the article review process. This systematized review was completed in partial fulfillment of the requirements of the first author's Masters of Science degree from the University of Minnesota.

Publisher Copyright:
© 2020 National Society of Genetic Counselors

Copyright 2020 Elsevier B.V., All rights reserved.


  • education/career and employment
  • emerging adult theory
  • family planning
  • genetic counseling
  • independence
  • life perspective
  • lived experience
  • patient genetic risk
  • psychosocial
  • relationships

PubMed: MeSH publication types

  • Journal Article
  • Systematic Review

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