AJOB Empirical Bioethics

ISSN: 2329-4515

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  1.  10
    The Need to Consider Context: A Systematic Review of Factors Involved in the Consent Process for Genetic Tests from the Perspective of Patients.Frédéric Coulombe & Anne-Marie Laberge - 2024 - AJOB Empirical Bioethics 15 (2):93-107.
    Background: Informed consent for genetic tests is a well-established practice. It should be based on good quality information and in keeping with the patient’s values. Existing informed consent assessment tools assess knowledge and values. Nevertheless, there is no consensus on what specific elements need to be discussed or considered in the consent process for genetic tests.Methods: We performed a systematic review to identify all factors involved in the decision-making and consent process about genetic testing, from the perspective of patients. Through (...)
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  2.  11
    Spotlighting Structural Constraints on Decisions About Participation in Genomic and Precision Medicine.Deanne Dunbar Dolan, Mildred K. Cho & Sandra Soo-Jin Lee - 2024 - AJOB Empirical Bioethics 15 (2):87-92.
    Public investments in genomic and precision medicine have begun to yield clinically useful interventions, most recently, for example, two new, FDA-approved gene therapies for sickle cell disease (F...
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  3.  3
    Understanding the Gap: A Cross-Sectional Survey of ELSI Scholars’ Dissemination Practices and Translation Goals.Deanne Dunbar Dolan, Rachel H. Lee, Mildred K. Cho & Sandra Soo-Jin Lee - 2024 - AJOB Empirical Bioethics 15 (2):147-153.
    Background Researchers engaged in the study of the ethical, legal, and social implications (ELSI) of genetics and genomics are often publicly funded and intend their work to be in the public interest. These features of U.S. ELSI research create an imperative for these scholars to demonstrate the public utility of their work and the expectation that they engage in research that has potential to inform policy or practice outcomes. In support of the fulfillment of this “translational mandate,” the Center for (...)
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  4.  14
    Interrogating the Value of Return of Results for Diverse Populations: Perspectives from Precision Medicine Researchers.Caitlin E. McMahon, Nicole Foti, Melanie Jeske, William R. Britton, Stephanie M. Fullerton, Janet K. Shim & Sandra Soo-Jin Lee - 2024 - AJOB Empirical Bioethics 15 (2):108-119.
    Background Over the last decade, the return of results (ROR) in precision medicine research (PMR) has become increasingly routine. Calls for individual rights to research results have extended the “duty to report” from clinically useful genetic information to traits and ancestry results. ROR has thus been reframed as inherently beneficial to research participants, without a needed focus on who benefits and how. This paper addresses this gap, particularly in the context of PMR aimed at increasing participant diversity, by providing investigator (...)
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  5.  18
    Parents and Provider Perspectives on the Return of Genomic Findings for Cleft Families in Africa.Abimbola M. Oladayo, Sydney Prochaska, Tamara Busch, Wasiu L. Adeyemo, Lord J. J. Gowans, Mekonen Eshete, Waheed Awotoye, Veronica Sule, Azeez Alade, Adebowale A. Adeyemo, Peter A. Mossey, Anya Prince, Jeffrey C. Murray & Azeez Butali - 2024 - AJOB Empirical Bioethics 15 (2):133-146.
    Background Inadequate knowledge among health care providers (HCPs) and parents of affected children limits the understanding and utility of secondary genetic findings (SFs) in under-represented populations in genomics research. SFs arise from deep DNA sequencing done for research or diagnostic purposes and may burden patients and their families despite their potential health importance. This study aims to evaluate the perspective of both groups regarding SFs and their choices in the return of results from genetic testing in the context of orofacial (...)
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  6.  9
    A Vision for Empirical ELSI along the R&D Pipeline.Ramya M. Rajagopalan, Julie Cakici & Cinnamon S. Bloss - 2024 - AJOB Empirical Bioethics 15 (2):81-86.
    In the 30 years since its inception under the auspices of the National Human Genome Research Institute (NHGRI), the field devoted to examining the ethical, legal and social implications (ELSI) of g...
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  7.  6
    Patient Perceptions on the Advancement of Noninvasive Prenatal Testing for Sickle Cell Disease among Black Women in the United States.Shameka P. Thomas, Faith E. Fletcher, Rachele Willard, Tiara Monet Ranson & Vence L. Bonham - 2024 - AJOB Empirical Bioethics 15 (2):154-163.
    Background Noninvasive prenatal testing (NIPT) designed to screen for fetal genetic conditions, is increasingly being implemented as a part of routine prenatal care screening in the United States (US). However, these advances in reproductive genetic technology necessitate empirical research on the ethical and social implications of NIPT among populations underrepresented in genetic research, particularly Black women with sickle cell disease (SCD).Methods Forty (N = 40) semi-structured interviews were conducted virtually with Black women in the US (19 participants with SCD; 21 (...)
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  8.  15
    Structural Equation Modeling Analysis on Associations of Moral Distress and Dimensions of Organizational Culture in Healthcare: A Cross-Sectional Study of Healthcare Professionals.Tessy A. Thomas, Shelley Kumar, F. Daniel Davis, Peter Boedeker & Satid Thammasitboon - 2024 - AJOB Empirical Bioethics 15 (2):120-132.
    Objective Moral distress is a complex phenomenon experienced by healthcare professionals. This study examined the relationships between key dimensions of Organizational Culture in Healthcare (OCHC)—perceived psychological safety, ethical climate, patient safety—and healthcare professionals’ perception of moral distress.Design Cross-sectional surveySetting Pediatric and adult critical care medicine, and adult hospital medicine healthcare professionals in the United States.Participants Physicians (n = 260), nurses (n = 256), and advanced practice providers (n = 110) participated in the study.Main outcome measures Three dimensions of OCHC were (...)
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  9.  12
    Perceptions of Psychosocial and Ethical Issues and the Psychological Characteristics of Donors in the Clinical Setting of Living Kidney Donors: A Qualitative Study.Nana Arai, Naoki Yokoyama, Mayumi Hara & Yoshiyuki Takimoto - 2024 - AJOB Empirical Bioethics 15 (1):22-32.
    Background There are several psychosocial and ethical issues surrounding the decision to be a living kidney donor. The present study aimed to determine the perceptions of psychosocial and ethical issues that living kidney donors may have, and analyze their psychological characteristics.Methods Face-to-face semi-structured interviews were conducted with 15 donors. Thematic analysis was then performed to categorize the thematic elements of the transcripts. All procedures were approved by the relevant review board.Results Four main categories were identified: Awareness of family dynamics, barriers (...)
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  10.  7
    Comparing Attitudes About Genomic Privacy and Data Sharing in Adolescents and Parents of Children Enrolled in a Genomic Research Repository.Courtney Berrios, Shelby Neal, Tricia Zion & Tomi Pastinen - 2024 - AJOB Empirical Bioethics 15 (1):33-40.
    Background Sharing of genomic data aims to make efficient use of limited resources, which may be particularly valuable in rare disease research. Adult research participants and parents of pediatric research participants have shown support for data sharing with protections, but little is known about adolescent attitudes on genomic privacy and data sharing.Methods In-depth interviews were conducted with 10 adolescents and 18 parents of children enrolled in a pediatric genomic research repository. Interview transcripts were analyzed for themes on attitudes toward genomic (...)
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  11.  17
    Stakeholders’ Ethical Concerns Regarding Psychiatric Electroceutical Interventions: Results from a US Nationwide Survey.R. Bluhm, E. D. Sipahi, E. D. Achtyes, A. M. McCright & L. Y. Cabrera - 2024 - AJOB Empirical Bioethics 15 (1):11-21.
    Background Psychiatric electroceutical interventions (PEIs) use electrical or magnetic stimulation to treat mental disorders and may raise different ethical concerns than other therapies such as medications or talk therapy. Yet little is known about stakeholders’ perceptions of, and ethical concerns related to, these interventions. We aimed to better understand the ethical concerns of a variety of stakeholder groups (patients with depression, caregivers of patients, members of the public, and psychiatrists) regarding four PEIs: electroconvulsive therapy (ECT), repetitive transcranial magnetic stimulation (rTMS), (...)
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  12.  15
    Frequency of Perceived Conflict between Families and Clinicians at Time of Clinical Ethics Consultation in Hospitalized Children.Aleksandra E. Olszewski, Chuan Zhou, Jiana Ugale, Jessica Ramos, Arika Patneaude & Douglas J. Opel - 2024 - AJOB Empirical Bioethics 15 (1):60-65.
    As a well-established service offered at many hospitals internationally, clinical ethics consultation (CEC) is increasingly recognized as a tool to improve patient care quality (Fox et al. 2022; Ta...
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  13.  20
    A Focus Group Study of the Views of Persons with a History of Psychiatric Illness about Psychiatric Medical Aid in Dying.Brent M. Kious & Margaret Pabst Battin - 2024 - AJOB Empirical Bioethics 15 (1):1-10.
    Background Medical aid in dying (MAID) is legal in a number of countries, including some states in the U.S. While MAID is only permitted for terminal illnesses in the U.S., some other countries allow it for persons with psychiatric illness. Psychiatric MAID, however, raises unique ethical concerns, especially related to its effects on mental illness stigma and on how persons with psychiatric illnesses would come to feel about treatment and suicide. To explore those concerns, we conducted several focus groups with (...)
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  14.  9
    Toward Consent in Molecular HIV Surveillance?: Perspectives of Critical Stakeholders.Stephen Molldrem, Anthony K. J. Smith & Vishnu Subrahmanyam - 2024 - AJOB Empirical Bioethics 15 (1):66-79.
    Background The emergence of molecular HIV surveillance (MHS) and cluster detection and response (CDR) programs as key features of the United States (US) HIV strategy since 2018 has caused major controversies. HIV surveillance programs that re-use individuals’ routinely collected clinical HIV data do not require consent on the basis that the public benefit of these programs outweighs individuals’ rights to opt out. However, criticisms of MHS/CDR have questioned whether expanded uses of HIV genetic sequence data for prevention reach beyond traditional (...)
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  15.  14
    Expert Views on Medical Involvement in the Swiss Assisted Dying Practice: “We Want to Have Our Cake and Eat It Too”?Christina Nyquist, Raphael Cohen-Almagor & Scott Y. H. Kim - 2024 - AJOB Empirical Bioethics 15 (1):41-59.
    Background Most jurisdictions that allow euthanasia and assisted suicide (AS) regulate it through the medical profession. However, the extent and nature of how medicine should be involved are debated. Swiss AS practice is unusual in that it is managed by lay AS organizations that rely on a law that permits AS when done for nonselfish reasons. Physicians are not mentioned in the law but are usually called upon to prescribe the lethal medications and perform capacity evaluations.Methods We analyzed in-depth interviews (...)
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  16.  33
    Advance Medical Decision-Making Differs Across First- and Third-Person Perspectives.James Toomey, Jonathan Lewis, Ivar R. Hannikainen & Brian D. Earp - 2024 - AJOB Empirical Bioethics:1-9.
    Background Advance healthcare decision-making presumes that a prior treatment preference expressed with sufficient mental capacity (“T1 preference”) should trump a contrary preference expressed after significant cognitive decline (“T2 preference”). This assumption is much debated in normative bioethics, but little is known about lay judgments in this domain. This study investigated participants’ judgments about which preference should be followed, and whether these judgments differed depending on a first-person (deciding for one’s future self) versus third-person (deciding for a friend or stranger) perspective. (...)
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