Predictors and Interdependence of Quality of Life in a Random Sample of Long-Term Young Breast Cancer Survivors and Their Biological Relatives.

Purpose: Quality of life (QOL) among young breast cancer survivors (YBCS) is often worse than QOL of older breast cancer survivors or age-matched peers without a history of cancer. Families commonly support YBCS, particularly during treatment, but little is known about long-term YBCS and family member QOL. The purpose of this study was to identify demographic, clinical, and psychosocial predictors of physical and mental QOL in YBCS and biological relatives and investigate associations between their QOL (i.

Safeguarding Privacy in Genome Research: A Comprehensive Framework for Authors.

As genomic research continues to advance, sharing of genomic data and research outcomes has become increasingly important for fostering collaboration and accelerating scientific discovery. However, such data sharing must be balanced with the need to protect the privacy of individuals whose genetic information is being utilized. This paper presents a bidirectional framework for evaluating privacy risks associated with data shared (both in terms of summary statistics and research datasets) in genomic research papers, particularly focusing on re-identification risks such as membership inference attacks (MIA).

Impact of barriers and motivators on intention and confidence to undergo hereditary cancer genetic testing.

Genetic testing for hereditary cancer syndromes can provide lifesaving information allowing for individualized cancer screening, prevention, and treatment. However, the determinants, both barriers and motivators, of genetic testing intention are not well described. A survey of barriers and motivators to genetic testing was emailed to adult patients eligible for genetic testing based on cancer diagnosis who previously have not had genetic testing (n = 201).

The Public Performativity of Trust.

Building trust between academic medical centers and certain communities they depend on in the research process is hard, particularly when those communities consist of minoritized or historically marginalized populations. Some believe that engagement activities like the creation of advisory boards, town halls, or a research workforce that looks more like community members will establish or reestablish trust between academic medical centers and racialized communities. However, without systematic approaches to dismantle racism, those well-intended actions become public performativity, and trust building will fail.

Big advocacy, little recognition: the hidden work of Black patients in precision medicine.

As cost-effective next-generation genome sequencing rapidly develops, calls for greater inclusion of Black people in genomic research, policy, and practice are necessary for effective translation of genomic science into precision population health and medicine. Employing a community-based participatory mixed methods research design, we developed a semi-structured survey that was disseminated to three cancer advocacy organizations. Of the 81 survey respondents 49 (60%) self-identified as Black, and 26 (32%) indicated a prior breast cancer diagnosis.

Big Advocacy, Little Recognition: The Hidden Work of Black Patients in Precision Medicine.

Public health genomics prioritizes effective and ethical translation of genomic science into population health precision medicine. With the rapid development of cost-effective, next-generation genome sequencing, calls are growing for greater inclusion of Black people in genomic research, policy, and practice. Genetic testing is often the first step in precision medicine.

Psychosocial factors impacting barriers and motivators to cancer genetic testing.

Background: Only a small proportion of patients who qualify for clinical genetic testing for cancer susceptibility get testing. Many patient-level barriers contribute to low uptake. In this study, we examined self-reported patient barriers and motivators for cancer genetic testing.

The Michigan Genetic Hereditary Testing (MiGHT) study's innovative approaches to promote uptake of clinical genetic testing among cancer patients: a study protocol for a 3-arm randomized controlled trial.

Background: Although most cancers are sporadic, germline genetic variants are implicated in 5-10% of cancer cases. Clinical genetic testing identifies pathogenic germline genetic variants for hereditary cancers. The Michigan Genetic Hereditary Testing (MiGHT) study is a three-arm randomized clinical trial that aims to test the efficacy of two patient-level behavioral interventions on uptake of cancer genetic testing.

Motivational interviewing for genetic counseling: A unified framework for persuasive and equipoise conversations.

Genetic counselors (GCs) have traditionally been trained to adopt a position of equipoise or clinical neutrality. They provide information, answer questions, address barriers, and engage in shared decision-making, but generally, they do not prescribe a genetic test. Historically, GCs have generally been trained not to persuade the ambivalent or resistant patient.

Building a framework to understand and address vulnerability to reading difficulties among children in schools in the United States.

This paper presents a vulnerability framework as a means to contextualize inequities in reading achievement among children who are vulnerable to poor reading outcomes. Models to understand vulnerability have been applied in the social sciences and public health to identify population disparities and design interventions to improve outcomes. Vulnerability is multifaceted and governed by context.

Information Needs of Breast Cancer Patients: Theory-Generating Meta-Synthesis.

Background: Breast cancer has become one of the most frequently diagnosed carcinomas and the leading cause of cancer deaths. The substantial growth in the number of breast cancer patients has put great pressure on health services. Meanwhile, the information patients need has increased and become more complicated.

Patient Engagement in Medical Research Among Older Adults: Analysis of the Health Information National Trends Survey.

Background: By 2035, it is expected that older adults (aged 65 years and older) will outnumber children and will represent 78 million people in the US population. As the aging population continues to grow, it is critical to reduce disparities in their representation in medical research.

Objective: This study aimed to describe sociodemographic characteristics and health and information behaviors as factors that influence US adults' interest in engaging in medical research, beyond participation as study subjects.

Improving Patient Participation in Cancer Clinical Trials: A Qualitative Analysis of HSRProj & RePORTER.

Enrollment and representativeness, in cancer trials, have been a problem resulting in studies with poor generalizability to the real-world population. This study uses qualitative analysis of two publicly available datasets (HSRProj and RePORTER) to explore funded research projects, which employ strategies at the macro, meso, and micro levels. Our research shows that although the number of projects designed to increase participation in cancer clinical trials peaked in the 2000s, most employ a single level strategy.