Multidisciplinary stakeholder-informed identification of key characteristics for implementation of workplace genetic testing.

Workplace genetic testing (wGT) is an evolving model for genetic testing where employees are offered consumer genetic testing through employer-sponsored wellness programs. However, the potential harms, benefits, and key characteristics for best implementation practices for wGT have yet to be defined. To address this issue, we conducted a three-round modified Delphi process, including multiple rounds of survey and a virtual deliberative workshop, with purposely chosen wGT stakeholders (employees, employers, ethical, legal, and social implications [ELSI] professionals, genetic testing industry representatives, and healthcare professionals) to share their perspectives.

Lessons for a learning health system: Effectively communicating to patients about research with their health information and biospecimens.

Introduction: Sharing patient health information and biospecimens can improve health outcomes and accelerate breakthroughs in medical research. But patients generally lack understanding of how their clinical data and biospecimens are used or commercialized for research. In this mixed methods project, we assessed the impact of communication materials on patient understanding, attitudes, and perceptions.

"A Double-Edged Sword": A Brief History of Genomic Data Governance and Genetic Researcher Perspectives on Data Sharing.

As the federal government continues to expand upon and improve its data sharing policies over the past 20 years, complex challenges remain. Our interviews with U.S.

Treatment Preference Archetypes in Eosinophilic Esophagitis and Their Implications for Therapy.

Introduction: Little is known about how patients make decisions about and prioritize therapies and disease management in eosinophilic esophagitis (EoE). We aimed to systematically identify and characterize patient perspectives and attitudes that influence decision making for EoE management.

Methods: To understand the diverse attitudes and values of patients with EoE, we designed a study using the Q-method.

Public deliberation to assess patient views on biosimilar medication switching for the treatment of inflammatory bowel disease.

Background: Biosimilars are highly similar, but not identical, versions of originator biologic medications. Switching patients to biosimilars presents an opportunity to mitigate rising drug costs and expand patient access to important biologic therapies. However, decreased patient acceptance and adherence to biosimilar medications have been reported, which can lead to loss of treatment response, adverse reactions, and inefficient resource utilization.

Genetic Researchers' Use of and Interest in Research With Diverse Ancestral Groups.

Importance: Genetic researchers must have access to databases populated with data from diverse ancestral groups to ensure research is generalizable or targeted for historically excluded communities.

Objective: To determine genetic researchers' interest in doing research with diverse ancestral populations, which database stewards offer adequate samples, and additional facilitators for use of diverse ancestral data.

Design, Setting, And Participants: This survey study was conducted from June to December 2022 and was part of an exploratory sequential mixed-methods project in which previous qualitative results informed survey design.

Genomic testing in voluntary workplace wellness programs in the US: Evidence and challenges.

Background: Workplace genetic and/or genomic testing (wGT) is one of many options that employers can offer within the scope of voluntary workplace wellness programs, though we know little about how many employers are offering this benefit, or what kinds of testing are included.

Methods: Our landscaping review sought to discover the prevalence and distribution of wGT within voluntary wellness programs among U.S.

US Residents' Preferences for Sharing of Electronic Health Record and Genetic Information: A Discrete Choice Experiment.

Objectives: The aim to this study was to assess preferences for sharing of electronic health record (EHR) and genetic information separately and to examine whether there are different preferences for sharing these 2 types of information.

Methods: Using a population-based, nationally representative survey of the United States, we conducted a discrete choice experiment in which half of the subjects (N = 790) responded to questions about sharing of genetic information and the other half (N = 751) to questions about sharing of EHR information. Conditional logistic regression models assessed relative preferences across attribute levels of where patients learn about health information sharing, whether shared data are deidentified, whether data are commercialized, how long biospecimens are kept, and what the purpose of sharing the information is.

A conceptual framework for clinical and translational virtual community engagement research.

Introduction: The COVID-19 pandemic accelerated a trend for clinical and translational community-engaged research in adapting to an increasingly virtual landscape. This requires a framework for engagement distinct from in-person research and program activities. We reflect on four case studies of community engagement activities that inform a conceptual framework to better integrate the virtual format into community-engaged research reflecting key tenets of health equity and antiracist praxis.

"Extremely slow and capricious": A qualitative exploration of genetic researcher priorities in selecting shared data resources.

Purpose: Genetic researchers' selection of a database can have scientific, regulatory, and ethical implications. It is important to understand what is driving database selection such that database stewards can be responsive to user needs while balancing the interests of communities in equitably benefiting from advances.

Methods: We conducted 23 semistructured interviews with US academic genetic researchers working with private, government, and collaboratory data stewards to explore factors that they consider when selecting a genetic database.

Gender-Based Discrimination and Sexual Harassment in Medical Physics.

Purpose: Gender-based discrimination and sexual harassment have been well-studied in the fields of science, technology, engineering, math, and medicine. However, less is known about these topics and their effect within the profession of medical physics. We aimed to better understand and clarify the views and experiences of practicing medical physicists and medical physics residents regarding gender-based discrimination and sexual harassment.

A qualitative investigation of resilience and well-being among medical physics residents.

Purpose: Medical physics residents (MPRs) will define and shape the future of physics in medicine. We sought to better understand the residency experience, as related to resilience and well-being, through the lens of current MPRs and medical physicists (MPs) working with residents.

Methods And Materials: From February-May 2019, we conducted 32, 1-h, confidential, semi-structured interviews with MPs either currently enrolled in an accredited residency (n = 16) or currently employed by a department with an accredited residency (n = 16).

Voluntary workplace genomic testing: wellness benefit or Pandora's box?

Consumer interest in genetic and genomic testing is growing rapidly, with more than 26 million Americans having purchased direct-to-consumer genetic testing services. Capitalizing on the increasing comfort of consumers with genetic testing outside the clinical environment, commercial vendors are expanding their customer base by marketing genetic and genomic testing services, including testing for pharmacogenomic and pathogenic variants, to employers for inclusion in workplace wellness programs. We describe the appeal of voluntary workplace genomic testing (wGT) to employers and employees, how the ethical, legal, and social implications literature has approached the issue of genetic testing in the workplace in the past, and outline the relevant legal landscape.

Gender Differences in Work-Life Integration Among Medical Physicists.

Purpose: To generate an understanding of the primary concerns facing medical physicists regarding integration of a demanding technical career with their personal lives.

Methods And Materials: In 2019, we recruited 32 medical physics residents, faculty, and staff via emails to US medical physics residency program directors to participate in a 1-hour, semistructured interview that elicited their thoughts on several topics, including work-life integration. Standard techniques of qualitative thematic analysis were used to generate the research findings.

Financial Toxicity During Breast Cancer Treatment: A Qualitative Analysis to Inform Strategies for Mitigation.

Purpose: Financial toxicity from cancer treatment is a growing concern. Its impact on patients requires refining our understanding of this phenomenon. We sought to characterize patients' experiences of financial toxicity in the context of an established framework to identify knowledge gaps and strategies for mitigation.

Huntington's Disease Community Perspectives on Desired Characteristics of Disease Modifying Therapies.

Background: Promising disease modifying therapies for Huntington's disease are now entering pivotal trials, raising questions of what patients and families consider successful outcomes. Consistent with an ongoing movement to incorporate patient preferences into the development of new therapies, we conducted a pilot study to assess Huntington's disease community views on emerging DMTs to assist in planning large-scale studies of patient preferences.

Methods: Semi-structured interviews were conducted with members of the Huntington's community (manifest disease, at-risk, and family/caregivers).

Eliciting patient views on the allocation of limited healthcare resources: a deliberation on hepatitis C treatment in the Veterans Health Administration.

Background: In response to the development of highly effective but expensive new medications, policymakers, payors, and health systems are considering novel and pragmatic ways to provide these medications to patients. One approach is to target these treatments to those most likely to benefit. However, to maximize the fairness of these policies, and the acceptance of their implementation, the values and beliefs of patients should be considered.

Interpretations of the Term "Actionable" when Discussing Genetic Test Results: What you Mean Is Not What I Heard.

In genomic medicine, the familiarity and inexactness of the term "actionable" can lead to multiple interpretations and mistaken beliefs about realistic treatment options. As part of a larger study focusing on public attitudes toward policies for the return of secondary genomic results, we looked at how members of the lay public interpret the term "medically actionable" in the context of genetic testing. We also surveyed a convenience sample of oncologists as part of a separate study and asked them to define the term "medically actionable.

Biobanks and the Moral Concerns of Donors: A Democratic Deliberation.

Do members of the public believe that biobanks should accommodate the moral concerns of donors about the types of research done with their biospecimens? The answer to this question is critical to the future of genomic and precision medicine, endeavors that rely on a public willing to share their biospecimens and medical data. To explore public attitudes regarding the requirements of consent for biobank donations, we organized three democratic deliberations involving 180 participants. The deliberative sessions involved small group discussions informed by presentations given by experts in both biobank research and ethics.

Effect of deliberation on the public's attitudes toward consent policies for biobank research.

In this study, we evaluate the effect of education and deliberation on the willingness of members of the public to donate tissue to biobank research and on their attitudes regarding various biobank consent policies. Participants were randomly assigned to a democratic deliberation (DD) group, an education group that received only written materials, and a control group. Participants completed a survey before the deliberation and two surveys post-deliberation: one on (or just after) the deliberation day, and one 4 weeks later.

Physician Experiences and Understanding of Genomic Sequencing in Oncology.

The amount of information produced by genomic sequencing is vast, technically complicated, and can be difficult to interpret. Appropriately tailoring genomic information for non-geneticists is an essential next step in the clinical use of genomic sequencing. To initiate development of a framework for genomic results communication, we conducted eighteen qualitative interviews with oncologists who had referred adult cancer patients to a matched tumor-normal tissue genomic sequencing study.

Public's Views toward Return of Secondary Results in Genomic Sequencing: It's (Almost) All about the Choice.

The therapeutic use of genomic sequencing creates novel and unresolved questions about cost, clinical efficacy, access, and the disclosure of sequencing results. The disclosure of the secondary results of sequencing poses a particularly challenging ethical problem. Experts disagree about which results should be shared and public input - especially important for the creation of disclosure policies - is complicated by the complex nature of genetics.

Understanding the Public's Reservations about Broad Consent and Study-By-Study Consent for Donations to a Biobank: Results of a National Survey.

Researchers and policymakers do not agree about the most appropriate way to get consent for the use of donations to a biobank. The most commonly used method is blanket-or broad-consent where donors allow their donation to be used for any future research approved by the biobank. This approach does not account for the fact that some donors may have moral concerns about the uses of their biospecimens.

Effect of Public Deliberation on Attitudes toward Return of Secondary Results in Genomic Sequencing.

The increased use of genomic sequencing in clinical diagnostics and therapeutics makes imperative the development of guidelines and policies about how to handle secondary findings. For reasons both practical and ethical, the creation of these guidelines must take into consideration the informed opinions of the lay public. As part of a larger Clinical Sequencing Exploratory Research (CSER) consortium project, we organized a deliberative democracy (DD) session that engaged 66 participants in dialogue about the benefits and risks associated with the return of secondary findings from clinical genomic sequencing.

The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate.

Donors to biobanks are typically asked to give blanket consent, allowing their donation to be used in any research authorized by the biobank. This type of consent ignores the evidence that some donors have moral, religious, or cultural concerns about the future uses of their donations - concerns we call "non-welfare interests". The nature of non-welfare interests and their effect on willingness to donate to a biobank is not well understood.