Jennifer L Young

Stanford University | SU · Stanford Center for Biomedical Ethics

This article approaches the topic of intimate interracial relations from a clinical perspective. Throughout this article, we use the term “interracial” relationships, which refers to partners’ different racial categories defined by their physical and biological characteristics. This term falls under the larger umbrella of “interethnic” relationship...

While the majority of biracial families are formed by adults of different races coming together, there are a growing number of biracial families that result from adults of one race adopting children of another race. Specifically, the number of white parents with minority children has grown in recent decades, but concerns exist regarding white paren...

Purpose: 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. Research approach: Constructivist grounded theory and anticipatory loss frameworks guided design and analysis. Sample an...

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. A search of five databases (1990 to 2018) returned 8,522 unique records. After removi...

Objective Our goal was to explore racial socialization practices in Asian American families during a time of heightened racial tension. Background 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 rac...

Objective: To explore the perspectives of parents of undiagnosed children enrolled in genomic diagnosis research regarding their motivations for enrolling their children, their understanding of the potential burdens and benefits, and the extent to which their experiences ultimately aligned with or diverged from their original expectations. Study...

Importance: The expansion of genetic and genomic testing in health care has led to recognition that these tests provide personal as well as clinical utility to patients and families. However, available systematic reviews on this topic have not reported the demographic backgrounds of participants in studies of personal utility, leaving generalizabi...

Importance: Expansion in the clinical use of genetic and genomic testing has led to a recognition that these tests provide personal as well as clinical utility to patients and families. It is essential to ensure that members of diverse sociodemographic backgrounds are included in defining and measuring personal utility. Objective: To determine the...

The causal mechanisms and manifestations of psychiatric illness cannot be neatly narrowed down or quantified for diagnosis and treatment. Large-scale genome-wide association studies (GWAS) might renew hope for locating genetic predictors and producing precision medicines, however such hopes can also distract from appreciating social factors and str...

As genetics is increasingly used across clinical settings, there is a need to understand the impact and experiences of diverse patients. This review systematically examined research literature on Latinx experiences with genetic counseling and genetic testing (GC/GT) in the United States, synthesizing key themes and knowledge gaps pertaining to both...

Purpose: Despite recent attention to increasing diversity in clinical genomics research, researchers still struggle to recruit participants from varied sociodemographic backgrounds. We examined the experiences of parents from diverse backgrounds with enrolling their children in clinical genomics research on rare diseases. We explored the barriers a...

It is widely acknowledged that there is a diversity problem in genomics stemming from the vast underrepresentation of non-European genetic ancestry populations. While many challenges exist to address this gap, a major complicating factor is the misalignment between (1) how society defines and labels individuals; (2) how populations are defined for...

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 t...

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 manife...

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 recruite...

Asian Americans hold a complex racial position in the U.S. They have been considered “honorary Whites,” unaffected by racial discrimination while simultaneously viewed as perpetual foreigners in their homeland. This study was conducted in the context of a historic uprising against racism and police brutality. Semi-structured interviews with 12 Asia...

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 exami...

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....

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 t...

Li-Fraumeni Syndrome (LFS) is characterized by risk of multiple primary malignancies in diverse sites, pediatric onset, near complete penetrance by age 70 years, limited options for prevention, and substantial uncertainty regarding disease manifestation and prognosis. Forty-five families, including 117 individuals aged 13–81 years, enrolled in the...

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...

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 inter...

Deleterious mutations in BRCA1 or BRCA2 genes increase a woman's lifetime risk of breast and ovarian cancer. Risk management guidelines endorse early detection and prevention behaviors. Despite expressed intent, uptake of these measures remains low. This longitudinal, qualitative study integrated retrospective and prospective data to distinguish fa...

Young women with BRCA1/2 mutations face difficult health care decisions regarding family formation, fertility, breast-feeding, and whether/when to undergo cancer risk-reducing surgery. This longitudinal qualitative study investigated these life choices during the reproductive years. We conducted 2 semi-structured interviews over three years with 12...

Rapid economic and social development in China is producing opportunities for a better standard of living for many families but also is associated with significant stress. Family therapy is one of the forms of mental health services that have become increasingly available. Western-derived models of family therapy are being used and adapted to meet...