Dr. Jennifer Young is a trained couples and family therapist working across the fields of public health, mental health, family systems, and genetics. She completed her PhD in Family Science at the University of Maryland in June 2018. Prior to receiving her doctorate, she received a BA (Psychology and Chinese) from the University of Wisconsin Madison, an MA (East Asian Languages and Literature) from The Ohio State University, and an MS in Couples and Family Therapy from the University of Maryland. She recently completed a four-year fellowship at the NIH in the National Cancer Institute’s Clinical Genetics Branch where she worked as a psychosocial qualitative research specialist and mental health clinician. At the NCI, her dissertation research outlined the unique social and psychological needs of families with a Li Fraumeni Syndrome, a rare cancer predisposition syndrome. Her research currently focuses on advocacy for culturally competent mental health resources for families undergoing genetic testing for inherited health conditions.
Doctor of Philosophy, University of Maryland College Park (2018)
Master of Science, University of Maryland College Park (2014)
Master of Arts, Ohio State University (2012)
Bachelor of Arts, University of Wisconsin Madison (2009)
Embodied risk for families with Li-Fraumeni syndrome: Like electricity through my body.
Social science & medicine (1982)
2022; 301: 114905
INTRODUCTION: Experiences of illness change the physical body and embodiments, or the ways in which the world and the self are known through the body. When illness is anticipated, such as with inherited cancer predisposition syndromes, risk becomes embodied and shared in family groups. Embodied risk is experienced whether or not symptoms have manifested. To examine how individuals and families with genetic risk experience the world and understand their disease through their bodies, we employ Li-Fraumeni syndrome (LFS) as an exemplar. LFS is a rare, genetic, cancer predisposition syndrome with nearly 100% lifetime cancer risk starting from birth, limited opportunities for prevention, rigorous screening protocols, and early mortality.METHODS: Forty-five families, including 117 individuals aged 13-81 years, enrolled in the National Cancer Insitute's LFS study (NCT01443468) completed 66 open-ended interviews regarding LFS experiences. An interdisciplinary team used modified grounded theory to explore physical aspects of living with LFS in psychosocial contexts.FINDINGS: The physicality of living with LFS included constant monitoring of LFS bodies across the family to identify physical change that might indicate carcinogenesis. Cancer screening, risk reduction, and treatment acted as dually protective and invasive, and as an unavoidable features of LFS. Connections between family members with similar embodiments normalized aesthetic changes and supported coping with visible markers of difference. In some circumstances, participants objectified the body to preserve the self and important relationships. In others, intense pain or loss created thresholds beyond which the self could no longer be separated from the body to support coping.DISCUSSION: This paper focuses on Li-Fraumeni syndrome, a familial condition with a well-established genetic identity in which the body-self is experienced in relation to important others, to medical imaging, and to historical experiences with cancer. We expand on theories of embodied risk and inter-embodiment to describe experiences across disease trajectories, with attention to division and union between body, self, and other.
View details for DOI 10.1016/j.socscimed.2022.114905
View details for PubMedID 35367908
Perceived utility and disutility of genomic sequencing for pediatric patients: Perspectives from parents with diverse sociodemographic characteristics.
American journal of medical genetics. Part A
Given the limited therapeutic options for most rare diseases diagnosed through genomic sequencing (GS) and the proportion of patients who remain undiagnosed even after GS, it is important to characterize a broader range of benefits and potential harms of GS from the perspectives of families with diverse sociodemographic characteristics. We recruited parents of children enrolled in the Undiagnosed Diseases Network. Parents completed an in-depth interview, and we conducted a comparative content analysis of the data. Parents (n=30) were demographically diverse, with 43.3% identifying as Hispanic, 33.3% primarily Spanish-speaking, and widely variable household income and education. Parents reported minimal changes in their child's health status following GS but did report a range of other forms of perceived utility, including improvements in their child's healthcare management and access, in their own psychological well-being, and in disease-specific social connections and research opportunities. Parents who received a diagnosis more frequently perceived utility across all domains; however, disutility also was reported by both those with and without a diagnosis. Impacts depended on multiple mediating factors, including parents' underlying expectations and beliefs, family sociodemographic characteristics, individual disease characteristics, and prior healthcare access. Our study suggests that the perceived utility of GS varies widely among parents and may depend on multiple individual, sociodemographic, and contextual factors that are relevant for pre- and post-GS counseling, for value assessment of GS, and for policymaking related to access to new genomic technologies.
View details for DOI 10.1002/ajmg.a.62619
View details for PubMedID 34981646
Precision Medicine Needs to Think Outside the Box.
Frontiers in genetics
2022; 13: 795992
Precision medicine offers a precious opportunity to change clinical practice and disrupt medicine's reliance on crude racial, ethnic, or ancestral categories by focusing on an individual's unique genetic, environmental, and lifestyle characteristics. However, precision medicine and the genomic studies that are its cornerstone have thus far failed to account for human diversity. This failure is made clearer when looking at individuals who encapsulate a mosaic of different genetic ancestries and do not fit neatly into existing population labels. This piece argues that precision medicine continues to rely on the same forms of crude categorization it seeks to unsettle. Until the scientific community creates inclusive solutions for individuals who fall outside or between our existing population labels, precision medicine will continue to fall short in its aims.
View details for DOI 10.3389/fgene.2022.795992
View details for PubMedID 35559033
Family Identity and Roles in the Context of Li-Fraumeni Syndrome: "No One's Like Us Mutants"
HEALTH & SOCIAL WORK
2021; 46 (4): 299-307
Li-Fraumeni syndrome (LFS) is a rare hereditary cancer syndrome in which individuals have a significantly increased risk of developing multiple cancers throughout the life span. An LFS diagnosis may shift the individual's sense of self and tolerance of cancer risk as they engage in cancer screening and cancer prevention activities. This study examined the impact of family identity on health decision making, communication, and role function. Forty-five families completed one or more interviews during an annual, protocol-specific cancer screening study. An interdisciplinary team analyzed 66 interviews using interpretive description and modified grounding theory. Thematically, identity emerged as an evolving construct regarding self and/or family, embedded in historical and ongoing experiences with LFS. Notions of individual and shared family identities guided decision making related to healthcare and influenced interpersonal communication and role function between supportive networks and families. Alignment between individual, family, and generational identities may shape engagement in genetic testing, risk management, and family life. Medical teams that are unequipped to address the psychosocial challenges that LFS populations face may include mental health professionals on interprofessional care teams to navigate risk management and consequential familial conflict.
View details for DOI 10.1093/hsw/hlab032
View details for Web of Science ID 000728173400008
View details for PubMedID 34618014
- Asian Americans' Emerging Racial Identities and Reactions to Racial Tension in the United States EMERGING ADULTHOOD 2021
"Race was something we didn't talk about": Racial Socialization in Asian American Families.
2021; 70 (4): 1027-1039
Our goal was to explore racial socialization practices in Asian American families during a time of heightened racial tension.Asian Americans hold a complex racial position in the United States, made even more complicated by an increase in public protests regarding socioracial injustices in the United States experienced by racial minority groups. Discussions about race and ethnicity occur within Asian American families but often focus on cultural heritage rather than awareness of discrimination and the historical roots of racism.Our study used an inductive-deductive thematic analysis to collect data from 12 Asian American young adults. Semistructured interviews queried participants' experiences with racial socialization in their nuclear families and their own racial identity.Qualitative analysis revealed the following themes: (a) Participants received limited messages regarding racial issues, (b) participants engaged in "bottom-up" racial socialization and taught their parents about race, and (c) participants felt left out of society's racial dialogue.During this time of heightened racial tension, Asian American young adults struggle to find their place, despite wanting to participate in community building.Without strong Asian American racial socialization practices in families, young adults must educate themselves and initiate racial meaning-making in their families.
View details for DOI 10.1111/fare.12495
View details for PubMedID 34707324
View details for PubMedCentralID PMC8547192
Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review.
Genetics in medicine : official journal of the American College of Medical Genetics
PURPOSE: Social media may be particularly valuable in research in rare genetic diseases because of the low numbers of patients and the rare disease community's robust online presence. The goal of this systematic review was to understand how social media is currently used in rare disease research and the characteristics of the participants in these studies.METHODS: We conducted a systematic review of six databases to identify studies published in English between January 2004 and November 2020, of which 120 met inclusion criteria.RESULTS: Most studies were observational (n=114, 95.0%) and cross-sectional (n=107, 89.2%), and more than half (n=69, 57.5%) utilized only surveys. Only 101 rare diseases were included across all studies. Participant demographics, when reported, were predominantly female (70.1% ± 22.5%) and white (85.0% ± 11.0%) adult patients and caregivers.CONCLUSION: Despite its potential benefits in rare disease research, the use of social media is still methodologically limited and the participants reached may not be representative of the rare disease population by gender, race, age, or rare disease type. As scholars explore using social media for rare disease research, careful attention should be paid to representativeness when studying this diverse patient community.
View details for DOI 10.1038/s41436-021-01273-z
View details for PubMedID 34282302
"Doctors can read about it, they can know about it, but they've never lived with it": How parents use social media throughout the diagnostic odyssey.
Journal of genetic counseling
Parents of children with undiagnosed conditions struggle to obtain information about how to treat and support their children. It can be particularly challenging to find communities and other parents who share their experiences and can provide emotional and informational support. This study sought to characterize how parents use social media, both throughout the diagnostic odyssey and post-diagnosis, to meet their informational, social, and emotional support needs. We conducted qualitative semi-structured interviews with 14 parents from the Stanford site of the Undiagnosed Diseases Network (UDN), including five whose children had received a diagnosis through study participation. Interview recordings were analyzed using inductive, team-based coding and thematic analysis based in grounded theory using Dedoose qualitative analysis software. Through this process, we identified four key themes related to social media use. First, parents struggled to find the "right" community, often seeking out groups of similar patients based on symptoms or similar conditions. Second, though they found much valuable information through social media about caring for their child, they also struggled to interpret the relevance of the information to their own child's condition. Third, the social support and access to other patients' and families' lived experiences were described as both highly valued and emotionally challenging, particularly in the case of poor outcomes for similar families. Finally, parents expressed the need to balance concerns about their child's privacy with the value of transparency and data sharing for diagnosis. Our results suggest that the needs and experiences of undiagnosed patients and families differ from those with diagnosed diseases and highlight the need for support in best utilizing social media resources at different stages of the diagnostic odyssey.
View details for DOI 10.1002/jgc4.1438
View details for PubMedID 34096130
Genetic counseling and testing for Asian Americans: a systematic review.
Genetics in medicine : official journal of the American College of Medical Genetics
PURPOSE: Asian Americans have been understudied in the literature on genetic and genomic services. The current study systematically identified, evaluated, and summarized findings from relevant qualitative and quantitative studies on genetic health care for Asian Americans.METHODS: A search of five databases (1990 to 2018) returned 8,522 unique records. After removing duplicates, abstract/title screening, and full text review, 47 studies met inclusion criteria. Data from quantitative studies were converted into "qualitized data" and pooled together with thematic data from qualitative studies to produce a set of integrated findings.RESULTS: Synthesis of results revealed that (1) Asian Americans are under-referred but have high uptake for genetic services, (2) linguistic/communication challenges were common and Asian Americans expected more directive genetic counseling, and (3) Asian Americans' family members were involved in testing decisions, but communication of results and risk information to family members was lower than other racial groups.CONCLUSION: This study identified multiple barriers to genetic counseling, testing, and care for Asian Americans, as well as gaps in the research literature. By focusing on these barriers and filling these gaps, clinical genetic approaches can be tailored to meet the needs of diverse patient groups, particularly those of Asian descent.
View details for DOI 10.1038/s41436-021-01169-y
View details for PubMedID 33972720
Beyond diagnosis: understanding the downstream impacts of genome sequencing for undiagnosed rare diseases
ACADEMIC PRESS INC ELSEVIER SCIENCE. 2021: S290
View details for Web of Science ID 000639219800446
- The Invisibility of Asian Americans in COVID-19 Data, Reporting, and Relief. The American journal of bioethics : AJOB 2021; 21 (3): 100–102
- "Race was something we didn't talk about": Racial Socialization in Asian American Families FAMILY RELATIONS 2020
Waiting and "weighted down": the challenge of anticipatory loss for individuals and families with Li-Fraumeni Syndrome.
Li-Fraumeni Syndrome (LFS) is characterized by risk of multiple primary malignancies in diverse sites, pediatric onset, near complete penetrance by age 70years, limited options for prevention, and substantial uncertainty regarding disease manifestation and prognosis. Forty-five families, including 117 individuals aged 13-81years, enrolled in the US National Cancer Institute's Li-Fraumeni Syndrome Study completed 66 interviews regarding their LFS experiences. An interdisciplinary team used modified grounded theory to examine family distress regarding expectations of loss and change due to likely cancer diagnoses, and the consequences of this likelihood across physical, social, and emotional domains. Disease-free periods were characterized by fearful anticipation of diagnosis or recurrence, uncertainty regarding post-treatment quality of life, and planning for shifts in family dynamics to enable caregiving. The chronicity of waiting for these changes incited dread and inhibited effective coping with the pragmatic, emotional, and existential challenges of the syndrome. Consequently, families reported high burden on roles and resources and limited guidance to prepare for, or achieve resolution with, grief. Anticipatory loss, the experience of bereavement prior to an expected change, distinguishes hereditary cancer risk from a sporadic diagnosis. Such grief is often incomplete in impact or meaning, subjected to rapid or profound change as conditions worsen, and poorly understood. In this study, losses were compounded by profound uncertainty, a chronic feature of LFS, which compromised mourning. Long-term engagement of mental health providers with bereavement training, in partnership with genetics providers, can provide invaluable educational and psychological support to families as they navigate these implacable challenges.
View details for DOI 10.1007/s10689-020-00173-6
View details for PubMedID 32222840
Health behavior change is related to management of cancer worry for families with Li-Fraumeni syndrome: "If you just change your diet, you're going to get cured"
WILEY. 2020: 99–100
View details for Web of Science ID 000514591500203
Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome: Connection versus independence
JOURNAL OF PSYCHOSOCIAL ONCOLOGY
2019; 37 (2): 178–93
Li-Fraumeni Syndrome (LFS) is an inherited tumor predisposition syndrome with lifetime cancer risks approaching 100% and evolving risk-management strategies. This study evaluated couples' coping with LFS-related burdens.Constructivist grounded theory and anticipatory loss frameworks guided design and analysis.Twenty-six individuals enrolled in the NCI LFS Family Study completed semi-structured interviews with their partner during annual screening visits. An interdisciplinary team completed open and focused coding to identify patterns of coping and adaptation.Couples described living with ambiguous danger, a state of chronic apprehension resulting from LFS-associated uncertainties. Most couples communicated openly and alternated shouldering the burden, while others engaged in protective buffering to shield each other from distress and sustain the appearance of normalcy.Optimally, coping reduces shared psychosocial distress, yet some strategies may inadvertently increase disconnection.Mental health support is critical for both partners coping with LFS, together and separately.
View details for DOI 10.1080/07347332.2018.1543376
View details for Web of Science ID 000465227200005
View details for PubMedID 30591002
Making adult decisions: Family planning in AYAs with LFS
WILEY. 2019: 39
View details for Web of Science ID 000459307700089
Family Health Leaders: Lessons on Living with Li-Fraumeni Syndrome across Generations.
Li-Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer screening. We explored healthcare roles for managing LFS-related cancer risks and treatments that were assumed by parents, adolescents, and adult children. Semi-structured interviews were conducted with 23 families. Family groupings were comprised of 2-5 members, with the younger generation in each family ranging in age from 7 to 40 years. Using grounded theory methods, we conducted open and focused coding of interview transcript content. Family members described how the role of health leader was implemented in their family, as well as factors such as maturation of a child or death of a member that determined who assumed particular roles and how these roles shifted over time. They often expressed collective responsibility for helping relatives understand LFS and implement appropriate cancer risk management. Members demonstrated their health role by attending others' medical appointments for support or information gathering. The health leader role was intergenerational and provided the family necessary support in navigating complicated healthcare decisions. Our findings provide insight into healthcare providers regarding how LFS patients and their relatives develop unique medical decision-making and caring roles influenced by the hereditary nature of LFS, and how these roles change over time. Providers who are attuned to family role dynamics may be better able to meet relatives' psychosocial and medical needs by understanding how living with LFS influences the family system's functioning and facilitating members' support for each other.
View details for DOI 10.1111/famp.12497
View details for PubMedID 31647118
Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions.
Journal of family nursing
In families with hereditary breast/ovarian cancer, complex disease histories challenge established patterns of family communication and influence decision-making for clinical surveillance, genetic testing, and risk management. An interdisciplinary team examined longitudinal interview data from women with identified BRCA1/2 mutations to assess interactions within family and social networks about risk information communication and management. We used interpretive description to identify motivation, content, and derived benefit of these interactions. Participants discussed risk information and management strategies with biological and nonbiological network members for multiple purposes: discharging responsibility for risk information dissemination, protecting important relationships, and navigating decision trajectories. Evolving interactions with loved ones balanced long-standing family communication patterns with differing personal preferences for privacy or open sharing, whereas interactions with nonbiological network members expanded participants' range of choices for sources of risk management information. Ongoing assessment of social networks may help support engagement with risk management by aligning with patient social needs.
View details for PubMedID 30537877