A Werner-Lin

Biographic Data

ID120016
NAMEA Werner-Lin
GIVEN NAMESA
FAMILY NAMEWerner-Lin
SIGNATUREWERNER-LIN A
AFFILIATIONSUniversity of Pennsylvania
ORCID0000-0003-3133-820X
VERIFIEDYes
TOTAL WORKS16
TOTAL CITATIONS15
AUTHOR COUNT16
EDITOR COUNT0
FIRST PUBLICATION YEAR2010
LATEST PUBLICATION YEAR2025
H-INDEX3

  • ‘I told them they had to get tested, and they did’: Social influence among siblings with Li-Fraumeni syndrome

    Chloe O Huelsnitz, A Werner-Lin et al.ARTICLEPsychology & Health2025

    OBJECTIVES: Health-related social influence refers to individual efforts to change another person's health beliefs and/or behavior. We sought to understand perspectives on social influence among adult siblings in families with an inherited cancer syndrome, Li-Fraumeni Syndrome (LFS). DESIGN: = 29, aged 18-66, 2-3 siblings per group) enrolled in the NCI's LFS Study. MAIN OUTCOME MEASURES: A semi-structured interview guide included questions target…

  • Relational Aspects to Screening-Associated Distress Among Individuals With Li-Fraumeni Syndrome: The All-Clear for Me Is Good. The All-Clear for My Kids Is Great

    Open AccessChloe O Huelsnitz, A Werner-Lin et al.ARTICLEQualitative Health Research2025References: 53

    Screening-associated distress, or "scanxiety," is a recognized challenge for individuals at risk of cancer diagnosis or recurrence, particularly for those with Li-Fraumeni syndrome (LFS), a cancer predisposition syndrome with high lifetime cancer risks. Despite the benefits of early detection, individuals with LFS report emotional and logistical burdens associated with intense screening. Existing research lacks a relational perspective on how dis…

  • A “rotating menu” of medical uncertainty for families affected by telomere biology disorders: A qualitative interview study

    Open AccessEmily E Pearce, Alina Majid et al.ARTICLESSM - Qualitative Research in…2024

    Background: Medical uncertainty may cause distress and challenge medical decision-making for patients with rare diseases and their caregivers. Few studies have examined the experience and management of medical uncertainty in rare disease and the dynamics of multiple medical uncertainty sources, issues, and management strategies. Objective: We explored the experience and management of uncertainty in individuals with telomere biology disorders (TBD…

  • Reproduction and Genetic Responsibility: An Interpretive Description of Reproductive Decision-Making for Young People With Li-Fraumeni Syndrome

    Open AccessRowan Forbes Shepherd, A Werner-Lin et al.ARTICLEQualitative Health Research2022

    The reproductive decision-making of young people (aged 15–39 years) with Li-Fraumeni syndrome (LFS), an early onset inherited cancer syndrome, has not been studied in depth. Using interpretive description methodology, we conducted semi-structured interviews with 30 young Australians (mean age 25.5 years) diagnosed with LFS or at 50% genetic risk. With reflexive thematic analysis, we show how young people’s reproductive decision-making and ideals …

  • Reproductive Beliefs Among Families With Li-Fraumeni Syndrome: Generations of Cancer Risk

    Open AccessCatherine Wilsnack, Jennifer L Young et al.ARTICLEJournal of the Society for Social…2022References: 1

  • I can control what I do with my daily life”: Occupational experiences of adolescents and young adults with Li-Fraumeni Syndrome

    Alix G Sleight, Camella J Rising et al.ARTICLEJournal of Occupational Science2022References: 1

    Objective: This qualitative study sought to explore the experiences of adolescents and young adults (AYAs) with Li-Fraumeni Syndrome (LFS), an inherited cancer predisposition syndrome, through an occupational lens. Method: Semi-structured interviews were conducted with 38 AYAs with LFS. Inductive analysis was used to code for themes and patterns related to occupation and well-being. Grounded theory and interpretive descriptive frameworks informed…

  • Embodied risk for families with Li-Fraumeni syndrome: Like electricity through my body

    Open AccessA Werner-Lin, Rowan Forbes Shepherd et al.ARTICLESocial Science & Medicine2022Cited by: 2References: 61

  • Actions and Uncertainty: How Prenatally Diagnosed Variants of Uncertain Significance Become Actionable

    Open AccessA Werner-Lin, Allison Werner‐Lin et al.ARTICLEThe Hastings Center Report2019

    The development of genomic technologies has seemed almost magical. Excitement about it, both in medicine and among the public, stems from the belief that genomic techniques will illuminate the causes of health and disease, will lead to effective interventions for both rare and common genetic conditions, and will inform reproductive decision‐making. Novel diagnostic tools, however, are often deployed before targeted therapies are developed, tested…

  • Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results

    Open AccessM A Rubel, A Werner-Lin et al.ARTICLECulture Medicine and Psychiatry2017

  • Family Strategies for Living with Rare Disease: The Experience of Cystinosis

    Open AccessMaya Doyle, A Werner-LinARTICLEJournal of the Society for Social…2016References: 3

    Objective: Medical advances have transformed the rare disease cystinosis from fatal in childhood to chronic and manageable well into adulthood, creating new challenges for patients, families, and providers. In response, families are adapting strategies to meet the demands of the illness and its treatments during a developmentally dense stage of life. Method: The study uses a classic grounded theory approach to understand the experience of adults …

  • An Observational Study of Children’s Involvement in Informed Consent for Exome Sequencing Research

    Open AccessVictoria A Miller, A Werner-Lin et al.ARTICLEJournal of Empirical Research on…2016References: 1

    The goal of this study was to examine children's involvement in consent sessions for exome sequencing research and associations of involvement with provider and parent communication. Participants included 44 children (8-17 years) from five cohorts who were offered participation in an exome sequencing study. The consent sessions were audiotaped, transcribed, and coded. Providers attempted to facilitate the child's involvement in the majority (73%)…

  • Couple's Narratives of Communion and Isolation Following Abnormal Prenatal Microarray Testing Results

    Open AccessA Werner-Lin, F K Barg et al.ARTICLEQualitative Health Research2016Cited by: 4References: 49

    In 2% to 3% of cases, prenatal microarray testing detects deletions and duplications in a fetus' genome that are undetected by conventional cytogenetics. Many of these changes are associated with variable or uncertain symptomatology. Little is known about how couples experience uncertain results. This study analyzed 24 interviews with members of 12 heterosexual U.S. couples who received pathogenic or uncertain microarray prenatal testing results.…

  • Holding Parents So They Can Hold Their Children: Grief Work with Surviving Spouses to Support Parentally Bereaved Children

    Open AccessA Werner-Lin, Nancee M BiankARTICLEOMEGA - Journal of Death and Dying2012

    A child's adjustment to the death of a parent is greatly influenced by the surviving parent's ability to attend to his or her own grief-related needs, to create and sustain a consistent and nurturing environment, and to encourage the child to express distressing or conflicting thoughts, feelings, and fantasies about the loss. Yet, the surviving parent's grief often compromises their ability to parent consistently and empathically. This article wi…

  • Cancer doesn't have an age: Genetic testing and cancer risk management in BRCA1/2 mutation-positive women aged 18-24

    Open AccessA Werner-Lin, Lindsey M Hoskins et al.ARTICLEHealth An Interdisciplinary…2012Cited by: 3References: 48

    Increasingly, 18-24-year-old women from hereditary breast/ovarian cancer (HBOC) families are pursuing genetic testing, despite their low absolute risks of breast and ovarian cancer and the fact that evidence-based management options used with older high-risk women are not generally available. Difficult clinical decisions in older carriers take on substantially more complexity and value-laden import in very young carriers. As a result, many of the…

  • Teaching Future Teachers: A Model Workshop for Doctoral Education

    Julia Pryce, Julia M Pryce et al.ARTICLEJournal of Teaching in Social Work2011Cited by: 3References: 2

    Doctoral student training has become focused in recent years on acquiring subject-area knowledge and research skills, rather than on teaching. This shift often leaves aspiring junior faculty feeling unprepared to address the demanding pedagogical requirements of the professoriate. In the area of social work, few programs contain a structured, required program of study that addresses issues unique to teaching in a school of social work. This artic…

  • Building the Cancer Family: Family Planning in the Context of Inherited Breast and Ovarian Cancer Risk

    Open AccessA Werner-LinARTICLEJournal of the Society for Social…2010Cited by: 3References: 5

    Deleterious BRCA1 and BRCA2 gene alterations significantly elevate a woman's risk of developing hereditary breast and ovarian cancer. A simple blood test can identify the presence of a BRCA gene alteration in a patient's DNA. Increasingly, individuals pursuing genetic testing to identify these alterations are also involved in family planning and parenting young children. However, the challenges unique to BRCA gene alteration carriers of reproduct…