Article
Oncology
Eline M. Bunnik, Wybo J. Dondorp, Annelien L. Bredenoord, Guido de Wert, Martina C. Cornel
Summary: The wider availability of genomic sequencing in cancer care allows for personalized medicine based on genetic characteristics. Genomic testing may yield various results beyond therapy-focused answers, such as germline mutations and variants of uncertain significance. Consent practices for genomic sequencing in mainstream cancer care should focus on preparing patients for unsolicited outcomes and may not require opt-out options when the chance of such findings is low. International guidelines for mainstreaming informed consent for genomic sequencing are necessary.
EUROPEAN JOURNAL OF CANCER
(2021)
Article
Biology
Maria Guarnaccia, Laura Guarnaccia, Valentina La Cognata, Stefania Elena Navone, Rolando Campanella, Antonella Ampollini, Marco Locatelli, Monica Miozzo, Giovanni Marfia, Sebastiano Cavallaro
Summary: The study developed a targeted next-generation sequencing approach for analyzing genetic variations and chromosomal aberrations in gliomas, which can provide accurate and specific assessment of tumor pathogenesis, prognosis, and treatment response. This has important implications for the diagnosis and treatment of gliomas.
Article
Oncology
Arnaud Bayle, Debora Basile, Simon Garinet, Bastien Rance, Pierre Laurent-Puig, Helene Blons, Julien Taieb, Geraldine Perkins
Summary: This study evaluated the role of NGS targeted panels in digestive oncology, showing that it allows for an exhaustive search for molecular abnormalities and provides patients with more opportunities for targeted therapies. Regular updates and further studies are needed for better analysis of prognostic factors.
Article
Obstetrics & Gynecology
Summary: Informed consent is a process that involves supporting patients to understand medical options and make voluntary and autonomous decisions, considering the risks, benefits, and alternatives.
FERTILITY AND STERILITY
(2023)
Article
Genetics & Heredity
Michael J. S. Beauvais, Adrian M. Thorogood, Michael J. Szego, Karine Senecal, M'an H. Zawati, Bartha Maria Knoppers
Summary: Children with rare and common diseases are currently undergoing whole genome sequencing in clinical and research settings. Parents may request access to their child's raw genomic data for analysis or sharing. Legal, ethical and practical issues are raised by these requests. Parents generally have the right to access their child's genomic data, but this right may be limited by the best interests of the child. Access rights can be transferred to children when they have decision-making capacity. Professional guidelines may assist in balancing access rights and the child's best interests.
FRONTIERS IN GENETICS
(2021)
Article
Psychology, Multidisciplinary
Edward Jacobs
Summary: As psychedelic-assisted psychotherapy (PAP) becomes more widely used, there is a need to adapt clinical ethics to accommodate its unique features. The long-term effects of psychedelic drugs and the transformative experiences they induce challenge the traditional understanding required for informed consent. This article explores the ethical implications and consequences for prospective patients.
FRONTIERS IN PSYCHOLOGY
(2023)
Article
Biochemistry & Molecular Biology
Markus Pfenninger, Philipp Schoennenbeck, Tilman Schell
Summary: Accurate estimation of genome sizes is essential in biodiversity genomics, and this study introduces a method that can estimate genome size from the number of sequenced bases and mean sequencing depth. Simulations demonstrate that even from low-coverage genome drafts, reasonable estimates can be obtained using this method. Comparison with flow cytometry estimates suggests that both methods provide similar and interchangeable results.
MOLECULAR ECOLOGY RESOURCES
(2022)
Article
Psychology
Dara Hallinan, Franziska Boehm, Annika Kuelpmann, Malte Elson
Summary: Psychological research often involves collecting and processing personal data from human participants. The European General Data Protection Regulation (GDPR) applies to such research conducted in the European Economic Area (EEA), and in some cases, even to research conducted outside the EEA. Informed consent is generally required before conducting psychological research that involves collecting personal data directly from participants. However, there may be cases where the information required by the GDPR is not provided. This tutorial aims to provide practical guidance to psychological researchers on the information that must be provided to participants under the GDPR in informed consent procedures.
ADVANCES IN METHODS AND PRACTICES IN PSYCHOLOGICAL SCIENCE
(2023)
Article
Remote Sensing
Vyshnave Jeyabalan, Lorie Donelle, Patrick Meier, Elysee Nouvet
Summary: Drones are being introduced in healthcare delivery worldwide, particularly in remote areas with inadequate healthcare services. However, there is limited guidance on engaging communities in decision-making about drone use. This paper focuses on obtaining consent for implementing Drones for Health projects, highlighting ethical and practical challenges.
Review
Ethics
Nadine S. J. Stirling, Victoria M. E. Bridgland, Melanie K. T. Takarangi
Summary: Warning research participants and patients about potential risks is crucial, but it may lead to negative expectations and subsequent negative outcomes. However, a scoping review found no existing quantitative studies investigating the nocebo effects and negative expectations arising from consent risk warnings. The limited conclusions may be due to methodological issues and inconsistent findings.
Article
Ethics
Garson Leder
Summary: This paper discusses whether psychotherapists should be transparent about the common factors in therapy. The author argues that while therapists should provide sufficient information for patients to make informed decisions, it is not necessary to disclose all therapeutic common factors. Furthermore, the research findings suggest that common factors in psychotherapy do not undermine the validity of specific theoretical forms of therapy.
JOURNAL OF MEDICAL ETHICS
(2021)
Article
Surgery
Joyce H. Pang, Esme Finlay, Sally Fortner, Bradley Pickett, Ming-Li Wang
Summary: The study showed that through virtual module communication skills training, students' self-efficacy in obtaining informed consent improved, with the majority of students considered satisfactory or above in each domain post-module. The virtual informed consent activity was generally positively viewed by students.
JOURNAL OF THE AMERICAN COLLEGE OF SURGEONS
(2021)
Article
Computer Science, Information Systems
Sarah K. Savage, Jonathan LoTempio, Erica D. Smith, E. Hallie Andrew, Gloria Mas, Amanda H. Kahn-Kirby, Emmanuele Delot, Andrea J. Cohen, Georgia Pitsava, Robert Nussbaum, Vincent A. Fusaro, Seth Berger, Eric Vilain
Summary: We implemented a chatbot consent tool to shift the time burden from study staff in support of a national genomics research study. We compared data from prospective participants who used the tool or had traditional consent conversations with study staff.
JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION
(2023)
Article
Environmental Studies
David A. Fennell
Summary: This paper pushes the animal ethics agenda forward by developing a novel animal-informed consent framework in tourism. It also discusses the issue of asymmetric agency between human and animal agents.
TOURISM MANAGEMENT
(2022)
Article
Biochemistry & Molecular Biology
David Lorenzo, Montse Esquerda, Margarita Bofarull, Victoria Cusi, Helena Roig, Joan Bertran, Joan Carrera, Francesc Torralba, Francisco Jose Cambra, Marti Vila, Martina Garriga, Francesc Palau
Summary: Important advances in genetics research have provided a wealth of genetic information that could potentially be reused. To protect the rights of individuals, ethical criteria need to be established, such as the consideration of genetic exceptionalism and the choice of consent type. The main conclusions suggest that genetic information requires special care and protection (genetic exceptionalism) and that broad consent is the most practical and trustworthy type for the reuse of genetic information.
EUROPEAN JOURNAL OF HUMAN GENETICS
(2023)
Article
Nursing
Daniel C. McFarland, Andrew H. Miller, Christian Nelson
Summary: In patients with metastatic lung cancer, depression and inflammation tend to increase together over time and have different effects on survival. Persistent depression is more detrimental, while incidental inflammation is more sensitive in predicting poor survival.
BIOLOGICAL RESEARCH FOR NURSING
(2021)
Article
Health Care Sciences & Services
Daniel C. McFarland, Madalyn Fernbach, William S. Breitbart, Christian Nelson
Summary: Depression and vitamin D deficiency are associated with worse survival in patients with metastatic lung cancer. This study highlights the importance of investigating the role of vitamin D deficiency and depression in cancer-related outcomes and suggests potential treatment strategies to improve quality of life and survival.
BMJ SUPPORTIVE & PALLIATIVE CARE
(2022)
Editorial Material
Health Care Sciences & Services
William E. Rosa, Laurie Andersen, Liz Blackler, Monica Cullen, Rachael O'Donnell, Tanya Uhlmann, Andrew S. Epstein
JOURNAL OF PALLIATIVE MEDICINE
(2021)
Article
Oncology
Daniel C. McFarland, Louis Voigt, Yesne Alici
Summary: Patients with Serious Mental Illness (SMI) have worse survival compared to cancer patients without SMI after controlling for delayed diagnosis. Decision-making capacity (DMC) may be impaired in both populations (cancer or SMI). Age and recent anticancer treatments are associated with decisional incapacity, with end of life concerns being more documented in non-SMI patients.
Article
Oncology
Daniel C. McFarland, Allison J. Applebaum, Erik Bengtsen, Yesne Alici, William Breitbart, Andrew H. Miller, Christian Nelson
Summary: The study investigated the correlation between albumin and neutrophil-to-lymphocyte ratio with anxiety and depression, finding that in patients with metastatic cancer, low albumin levels may predict the presence and severity of anxiety and depression.
Editorial Material
Oncology
Fay J. Hlubocky, Banu E. Symington, Daniel C. McFarland, Colleen M. Gallagher, Konstantin H. Dragnev, John M. Burke, Richard T. Lee, Areej El-Jawahri, Beth Popp, Abby R. Rosenberg, Michael A. Thompson, Don S. Dizon, Piyush Srivastava, Manali I. Patel, Arif H. Kamal, Christopher K. Daugherty, Anthony L. Back, Mehmet E. Dokucu, Tait D. Shanafelt
JCO ONCOLOGY PRACTICE
(2021)
Article
Ethics
Liz Blackler, Amy E. Scharf, Konstantina Matsoukas, Michelle Colletti, Louis P. Voigt
Summary: Clinical ethics consultations are important in supporting patients, families, and clinicians in facing ethical or moral challenges in patient care. By providing an open forum for communication, these consultations encourage all stakeholders to express their concerns and viewpoints. Empowering patients and families to request ethics consultations can enhance the patient/family-clinician relationship and improve patient-centered care.
JOURNAL OF MEDICAL ETHICS
(2023)
Review
Oncology
Daniel C. McFarland, Meredith Doherty, Thomas M. Atkinson, Robin O'Hanlon, William Breitbart, Christian J. Nelson, Andrew H. Miller
Summary: This study conducted a systematic review and meta-analysis to examine the relationship between inflammation and depression in cancer patients. The findings suggest that peripheral inflammatory markers, such as IL-6, TNF, and CRP, are associated with depressive symptoms in various cancer settings. These results have implications for the identification and management of depression in cancer patients.
Article
Health Policy & Services
William E. Rosa, Shila Pandey, Andrew S. Epstein, Stephen R. Connor, Laurie J. Andersen, Allison J. Applebaum, Liz Blackler, Lauren Akua Koranteng, William S. Breitbart, Judith E. Nelson
Summary: This article summarizes the 2nd Annual United States Celebration of World Hospice and Palliative Care Day (WHPCD) hosted by the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences on October 5-6, 2021. The event was organized in line with the international WHPCD theme of "Leave No One Behind - Equity in Access to Palliative Care." The article reflects on the event and prepares for the upcoming 3rd annual conference in 2022.
PALLIATIVE & SUPPORTIVE CARE
(2022)
Review
Public, Environmental & Occupational Health
Elizabeth Badalov, Liz Blackler, Amy E. Scharf, Konstantina Matsoukas, Sanjay Chawla, Louis P. Voigt, Arthur Kuflik
Summary: The COVID-19 pandemic has exacerbated existing disparities in health and healthcare access, leading to significantly higher mortality rates among historically marginalized communities. Traditional allocation methods, which prioritize those most likely to benefit, may perpetuate and worsen systemic injustices. Addressing and reforming structural inequities in society is essential to better prepare for future pandemics.
INTERNATIONAL JOURNAL FOR EQUITY IN HEALTH
(2022)
Article
Ethics
Liz Blackler, Amy E. Scharf, Martin Chin, Louis P. Voigt
Summary: In a healthcare environment, uncivil behavior from patients and families towards clinicians and staff can have negative impacts. Ethics Committees and Clinical Ethics Consultation Services can help manage incivility by evaluating policies, working with stakeholders, and promoting a professional climate.
Article
Oncology
Priya H. Marathe, Hao Zhang, Liz Blackler, Peter D. Stetson, Louis P. Voigt, Danielle Novetsky Friedman
Summary: This study retrospectively evaluated the impact of implementing an electronic order for ethics consultation requests at Memorial Sloan Kettering Cancer Center. The results showed a significant increase in the number of consultation requests, particularly in inpatient and outpatient settings. The implementation of this electronic order may help reduce barriers to clinical ethics consultation.
JCO ONCOLOGY PRACTICE
(2022)
Article
Oncology
Fay J. Hlubocky, Daniel C. McFarland, Anthony L. Back, Christopher R. Friese, Laurel Lyckholm, Colleen M. Gallagher, Molly McGinnis, Rebecca Spence, Laura Lynch, Julia Tomkins, Tait Shanafelt, Piyush Srivastava
Summary: This study developed a virtual group peer support program for oncologists and found that it was feasible, acceptable, and beneficial for enhancing their well-being.
JCO ONCOLOGY PRACTICE
(2023)
Article
Health Policy & Services
Daniel C. McFarland, Leah E. Walsh, Rebecca Saracino, Christian J. Nelson, William Breitbart, Barry Rosenfeld
Summary: The study evaluated sickness behavior in patients with advanced lung cancer, demonstrating that the SBI-R has good internal consistency and construct validity in this population, showing positive correlations with depressive symptoms and inflammation.
PALLIATIVE & SUPPORTIVE CARE
(2021)
Review
Oncology
Danielle Novetsky Friedman, Liz Blackler, Yesne Alici, Amy E. Scharf, Martin Chin, Sanjay Chawla, Monique C. James, Louis P. Voigt
Summary: During the early stages of the COVID-19 pandemic, patients with cancer and COVID-19 prompted numerous ethics consultations, with a focus on decisions regarding medical care. Concerns were also raised about patient autonomy, resource allocation, and staff safety in providing care to patients with limited benefit.
JCO ONCOLOGY PRACTICE
(2021)
Article
Oncology
Christine J. McPherson, Alanna Devereaux
Summary: This study examines the dyadic effects of patient and caregiver attachment orientations on mutually supportive care in cancer treatment. It highlights the interdependence within the cancer caregiving relationship and emphasizes the importance of considering individual and relational ways of responding in providing support. Attachment theory provides a framework for understanding and therapeutic intervention.
