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Ethics

Everything on the hub tagged Ethics: researchers, groups, current studies, resources and published literature together.

135 results

Researchers

Aline Rocha
Brazil
Cinara
Center for Research and Implementation in Palliative Care · Brazil
Dr Emily Harrop
Helen & Douglas House · United Kingdom
Iñigo de Noriega-Echevarría
Hospital Infantil Universitario del Niño Jesús · Spain
Jolanta
Shooting Star Children's Hospices · United Kingdom
Kanako Takeda
Division of Palliative Medicine, National Centre for Child Health and Development · 日本
Najiya P
National institute of mental health and neuroscience · India
Rebecca Singer Cohen
Johns Hopkins School of Nursing · United States
Sophie Bertaud
Great Ormond Street Hospital for Children · UK

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Published literature

A Life Worth Sustaining? Bestowed Worth and Pediatric Care
Kim D, Yu X · The Hastings Center report · 2026
An ethical rationale for perinatal palliative care
Carter B · Semin Perinatol · 2021
An Unsuspected Case of Child Physical Abuse in a Pediatric Patient Enrolled in Hospice
Harris K, Ibach M, Lowen D, Hills T, Copenhaver E · Clin Pediatr (Phila) · 2022
Assisted dying in the UK: please don't ignore the impact on children and young people
Fraser L, Downie J · Archives of Disease in Childhood · 2025
A survey of key opinion leaders on ethical resuscitation practices in 31 European Countries
Mentzelopoulos S, Bossaert L, Raffay V, Askitopoulou H, Perkins G, Greif R, Haywood K, Van de Voorde P, Xanthos T · Resuscitation · 2016
At the boundaries of life: Suffering and decision-making in children with life-threatening conditions (1-12 years)
Brouwer M · 2021
[Bioethics in end-of-life decisions in neonatology: Unresolved issues]
Arnaez J, Tejedor J, Caserio S, Montes M, Moral M, Gonzalez de Dios J, Garcia-Alix A · An Pediatr (Barc) · 2017
Can the Ethical Best Practice of Shared Decision-Making lead to Moral Distress?
Prentice T, Gillam L · Journal of bioethical inquiry · 2018
Caring for Premature Life and Death: The Relational Dynamics of Detachment in a NICU
Seo B · Medical Anthropology · 2016
Challenges in receiving research ethics committee approval for studies involving children and young people with life-limiting conditions and life-threatening illnesses: Analysis of research ethics committee minutes and correspondence with principle investigators
Butler A, Vincent K, Bluebond-Langner M · Archives of Disease in Childhood · 2018
Characteristics and Timing of Dual Pediatric Palliative Care and Ethics Consultations
Alshamaa F, Charlier O, Humphrey C, Taylor L, Firn J · HEC Forum · 2026
Children's outcomes at 2-year follow-up after 4 years of structured multi-professional medical-ethical decision-making in a neonatal intensive care unit
de Boer J, Gennissen L, Williams M, van Dijk M, Tibboel D, Reiss I, Naghib S, Sol J · Journal of Perinatology · 2017
Cleft lip repair in trisomy 18: ethical considerations for aesthetic surgery in a life-limiting paediatric disease
Landeen K, Patel K, Tanious M · BMJ case reports · 2026
Clinician views on and ethics priorities for authorizing medical cannabis in the care of children and youth in Canada: a qualitative study
Gunning M, Rotenberg A, Kelly L, Crooks B, Oberoi S, Rapoport A, Rassekh S, Illes J · CMAJ open · 2022
Commentary From a Pediatric Complexologist and a Pediatric Palliative Care and Ethics Consultant
Tapia C, Jarrell J · The American journal of bioethics : AJOB · 2016
Conflicts in Best Interest; Infants with severe neuromuscular disorders presenting to UK Courts
Majumdar A, Sanchez Marco S · Journal of neuromuscular diseases · 2026
Considering Parental Requests to Withdraw Life-Sustaining Care in Seriously Ill Children: A Case Report and Ethical Analysis
Hauptman L, Arnolds M, Brownson R, Marks A · Journal of Pain & Symptom Management · 2026
Continuation of Potentially Inappropriate Life-Sustaining Therapies: Provider Perspectives
DePew R, Bonnet K, Schlundt D, Turnbull J, Propper R · Journal of pain and symptom management · 2025
Death Is Too High a Price to Pay for Being Born an Impoverished and Ill Child
Coleman C · American Journal of Bioethics · 2025
Decision-Making at End-of-Life for Children With Cancer: A Systematic Review and Meta-Bioethical Analysis
Juarez-Villegas L, Altamirano-Bustamante M, Zapata-Tarres M · Frontiers in Oncology · 2021
Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part II)
Mariani G, Arimany M · Decisiones en reanimacion y cuidados de fin de vida en neonatos. Aspectos bioeticos (parte II). · 2023
Delivery room practices for extremely preterm infants: The harms of the gestational age label
Janvier A, Lantos J · Archives of Disease in Childhood: Fetal and Neonatal Edition · 2016
Dignity in the Pediatric Population: A Systematic Review
Silverstein A, Easton V, Barrows C, Sawyer K, Coughlin R, Mali N, Kessler A, Robinson M, Sirrine E, Spears M, Wrigley J, Baker J, Kaye E · Journal of pain and symptom management · 2024
Disputes over Diagnosing Death: Is It Ethical to Test for Death by Neurologic Criteria over Parental Objection?
Eisenberg L · American Journal of Bioethics · 2023
Doing our best and doing no harm: A focused ethnography of staff moral experiences of providing palliative care at a Médecins Sans Frontières pediatric hospital in Cox's Bazar, Bangladesh
Yantzi R, Hadiuzzaman M, Sen Gupta P, Lamrous A, Richardson K, Pringle J, Schwartz L, Hossain P, Kizito D, Burza S · PLoS One · 2023
End of life care in the setting of extreme prematurity - practical challenges and ethical controversies
Wilkinson D, Bertaud S · Semin Fetal Neonatal Med · 2023
Ethical challenges and justice concerns for infants and children with life-limiting conditions and significant disability, including trisomy 13 and 18
Pyle A, Mercurio M · Seminars in Perinatology · 2025
Ethical challenges for a new generation of early-phase pediatric gene therapy trials
Iyer A, Saade D, Bharucha-Goebel D, Foley A, Averion G, Paredes E, Gray S, Bonnemann C, Grady C, Hendriks S, Rid A · Genetics in Medicine · 2021
Ethical Challenges in Neonatal Life Support
Singh S, Buddington S, Huseynova R · Newborn: Official Journal of the Global Newborn Society · 2025
Ethical Considerations in Critically Ill Neonatal and Pediatric Patients
Harting M, Munson D, Linebarger J, Hirshberg E, Gow K, Malek M, Robbins A, Turnbull J · Journal of Pediatric Surgery · 2023
Ethical Considerations in Ever-Expanding Utilization of ECLS: A Research Agenda
Clark J, Baden H, Berkman E, Bourget E, Brogan T, Di Gennaro J, Doorenbos A, McMullan D, Roberts J, Turnbull J, Wilfond B, Lewis-Newby M · Front Pediatr · 2022
Ethical decision making in neonatal units--the normative significance of vitality
Brinchmann B, Nortvedt P · Medicine, Health Care & Philosophy · 2001
Ethical dilemmas encountered by a palliative care team at a Pediatric cancer center in guatemala
Bustamante Tuchez L, Rivas S, Paz G, Valverde P, Zaidi A, Close P · Pediatric Blood and Cancer · 2018
Ethical Framework for Risk Stratification and Mitigation Programs for Children With Medical Complexity
Feudtner C, Schall T, Nathanson P, Berry J · Pediatrics · 2018
Ethical Issues around Death and Withdrawal of Life Support in Neonatal Intensive Care
Pant S · Indian Journal of Pediatrics · 2022
Ethical issues in neonatal intensive care units
Liu J, Chen X, Wang X · Journal of Maternal-Fetal and Neonatal Medicine · 2016
Ethical Principles in Digital Palliative Care for Children: The MyPal Project and Experiences Made in Designing a Trustworthy Approach
Garani-Papadatos T, Natsiavas P, Meyerheim M, Hoffmann S, Karamanidou C, Payne S · Front Digit Health · 2022
Ethics and palliative care in the perinatal world
Marty C, Carter B · Semin Fetal Neonatal Med · 2017
Ethics and patient and public involvement with children and young people
Mitchell S, Slowther A, Coad J, Akhtar S, Hyde E, Khan D, Dale J · Archives of disease in childhood. Education and practice edition · 2019
Ethics at the end of life in the newborn intensive care unit: Conversations and decisions
Mercurio M, Gillam L · Seminars in Fetal and Neonatal Medicine · 2023
Ethics consultation in pediatrics: long-term experience from a pediatric oncology center
Johnson L, Church C, Metzger M, Baker J · The American journal of bioethics : AJOB · 2015
Everyday Ethics or Deference to Expertise: Experiences of Pediatric Palliative Care Teams with Ethics Consultancy
Foxwell A, Ulrich C, Walter J, Weaver M · Journal of palliative medicine · 2024
Experience of Pediatric Patient Death, Moral Distress, and Turnover Intention among Pediatric Nurses at a Tertiary Hospital in South Korea: A Cross-Sectional Study
Jang S, Min A, Kim S · Journal of palliative medicine. · 2022
Extremely premature infant care: Reasonable progress or therapeutic fury?
Kaempf J · Seminars In Fetal & Neonatal Medicine · 2026
Guidance on forgoing life-sustaining medical treatment
Weise K, Okun A, Carter B, Christian C, Katz A, Laventhal N, MacAuley R, Moon M, Opel D, Statter M, Davies D, Dell M, Diekema D, Klipstein S, Elster N, Rivera F, Feudtner C, Boss R, Hauer J, Humphrey L, Klick J, Linebarger J, Parker S, Lord B, Imaizumi S, Guinn-Jones M, Flaherty E, Gavril A, Idzerda S, Laskey A, Legano L, Leventhal J, Fortson B, MacMillan H, Stedt E, Hurley T · Pediatrics · 2017
Has Pediatric Palliative Care Become Too Deferential? A Challenge To and For the Field
Humphrey L, Jacobowski N, Truba N · Journal of Pain and Symptom Management · 2024
Health professionals' perceptions about the decision-making process in the care of pediatric patients
Trotta E, Scarpa F, Halal M, Goldim J, Carvalho P · Revista Brasileira de Terapia Intensiva · 2016
How are agency and autonomy understood in children’s palliative and end-of-life care?: A narrative review
Campbell S, Delaney L, Rovensky N, Kent R, Matthiesen A, Carnevale F, Macdonald M · Palliative Care and Social Practice · 2026
Infant Organ Donation after Death by Circulatory Criteria: A Literature Scoping Review
St Louis J, Weiss M, Al-Ayass S, Tierney S, Wright A, Dhanani S, Widger K · Pediatric Critical Care Medicine · 2025
Injustice and inequality in the provision of perinatal palliative care
Lin M, Bertaud S, Wilkinson D · Seminars in Perinatology · 2025
Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children
Butler A, Vincent K, Bluebond-Langner M · Palliat Med · 2020
Is this as good as it gets? Implications of an asymptotic mortality decline and approaching the nadir in pediatric intensive care
Moynihan K, Lelkes E, Kumar R, DeCourcey D · European Journal of Pediatrics · 2022
"It scares me to know that we might not have been there!": a qualitative study into the experiences of parents of seriously ill children participating in ethical case discussions
Forde R, Linja T · BMC Med Ethics · 2015
Low prevalence of palliative care and ethics consultations for children with chronic critical illness
Boss R, Falck A, Goloff N, Hutton N, Miles A, Shapiro M, Weiss E, Donohue P · Acta Paediatrica, International Journal of Paediatrics · 2018
Mediating religious disputes about children's medical treatment: a qualitative study
Lindsey J · BMJ Paediatrics Open · 2025
Medical assistance in dying: A paediatric perspective
Davies D · Paediatrics and Child Health · 2018
Moral Distress and Pediatric Palliative Care
Jeong S, Knackstedt A, Linebarger J, Carter B · Children · 2024
Moral Distress in Pediatric Palliative Care: A Cross-Sectional Study with Brazilian Professionals
Beltrao J, Zem K, Celli L, Corradi-Perini C · The American journal of hospice & palliative care · 2025
Moral Distress in the Everyday Life of an intensivist
Garros D · Frontiers in Pediatrics · 2016
Moral Distress of Clinicians in Canadian Pediatric and Neonatal ICUs
Dryden-Palmer K, Moore G, McNeil C, Larson C, Tomlinson G, Roumeliotis N, Janvier A, Parshuram C · Pediatr Crit Care Med · 2020
Moral equivalence theory in neonatology
Lin M, Vitcov G, Cummings C · Semin Perinatol · 2022
Moral experiences of children with medical complexity: A participatory hermeneutic ethnography in Brazil
Passos dos Santos R, Macdonald M, Carnevale F · Journal of Child Health Care · 2023
Navigating a child's best interest: the essential role of palliative care
Craig F · The Lancet Child and Adolescent Health · 2023
Navigating Decisional Discord: The Pediatrician's Role When Child and Parents Disagree
Sisk B, DuBois J, Kodish E, Wolfe J, Feudtner C · Pediatrics · 2017
Neither the “Devil’s Lettuce” nor a “Miracle Cure:” The Use of Medical Cannabis in the Care of Children and Youth
Gunning M, Rotenberg A, Anderson J, Balneaves L, Brace T, Crooks B, Hall W, Kelly L, Rassekh S, Rieder M, Virani A, Ware M, Zaslawski Z, Siden H, Illes J · Neuroethics · 2022
Neonatal euthanasia in the context of palliative and EoL care
Verhagen A · Semin Fetal Neonatal Med · 2023
Neonatal euthanasia is unsupportable: the Groningen protocol should be abandoned
Kon A · Theoretical Medicine & Bioethics · 2007
Noninvasive Ventilation in Palliative Care and Ethical Dilemma
Krivec U, Caggiano S · Frontiers in Pediatrics · 2020
Opinions of members of the National Civil (Family Proceedings) and Criminal Courts in withholding or withdrawing of life support situations in pediatrics
Selandari J, Ciruzzi M, Roitman A, Ledesma F, Menendez C, Garcia H · Arch Argent Pediatr · 2016
Paediatric ethics: a repudiation of the Groningen protocol
Kodish E · Lancet · 2008
Paediatric palliative care and paediatric euthanasia: clarifying a moral continuum
Joren C, Verhagen A, Lantos J · The Lancet Child and Adolescent Health · 2026
Parental autonomy and children's health: a patriarchal dilemma in the Middle East, with particular emphasis on Kuwait
Al Majed B · Medical law review · 2025
Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands
Neefjes V · Journal of palliative medicine · 2023
Parental hope in paediatric palliative care: a systematic review of the ethical issues in evidence-based literature
Szabat M, Zurzycka P · BMC Medical Ethics · 2026
Parent and medical team disagreements in the UK: universal lessons in the origins and resolution in conflict
Mackintosh K, McConnell P · J Anesth Analg Crit Care · 2022
Pediatric End of Life Care and Bereavement During COVID- 19: The Experiences of Moral Distress
Wiener L · Psycho-Oncology · 2022
Pediatric Ethics and Communication Excellence (PEACE) Rounds: Decreasing Moral Distress and Patient Length of Stay in the PICU
Wocial L, Ackerman V, Leland B, Benneyworth B, Patel V, Tong Y, Nitu M · HEC Forum · 2017
Pediatric palliative medicine in Brazil: an ethical reflection of medical practice
Rocha A, Freitas L, Cesconetto J, Reboucas L, Salomao V, Nunes R · Acta Bioethica · 2023
Physician-hastened death in young children: Getting to underlying assumptions
Liao L, Chan D · Paediatrics and Child Health (Canada) · 2016
Premortem interventions in dying children to optimise organ donation: an ethical analysis
Brierley J, Shaw D · J Med Ethics · 2016
Prognostic Disclosure to Dying Adolescents Against Parental Wishes: A Point-Counter Point Debate
Tanious M, Goodrich G, Pedigo V, Ozark S, Arenth J · HEC Forum · 2024
Promoting an ethic of engagement in pediatric palliative care research
Rahimzadeh V, Bartlett G, Longo C, Crimi L, Macdonald M, Jabado N, Ells C · BMC Palliat Care · 2015
Protection of children's rights to access palliative medical services: Legal problems
Shevchuk O, Shevchuk A, Holovash O, Mykhailenko O, Ivanytsia A · Wiadomosci lekarskie (Warsaw, Poland : 1960) · 2025
Psychometrics assessment of ethical decision-making around end-of-life care scale for adolescents in the final stage of life
Mohammadi F, Masoumi S, Khazaei S, Hosseiny S · Frontiers in Pediatrics · 2023
Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates
Schneider K, Roll S, Tissen-Diabate T, Buhrer C, Garten L · JAMA Network Open · 2024
Quality of life: what matters?
Hain R, Turner S · Arch Dis Child · 2022
Reflections on charlie gard and the best interests standard from both sides of the atlantic ocean
Ross L · Pediatrics · 2020
Relationship Between Clinical Decision-Making and Moral Distress in Neonatal Intensive Care Unit Nurses: A Multicenter Cross-Sectional Correlational Descriptive Study
Nobahar M, Ghorbani R, Alipour Z, Jahan E, Fortney C · Advances in Neonatal Care · 2025
Resolving Scottish paediatric end-of-life conflicts
Sivers S, Downie M · Med Leg J · 2022
Responding to Parental Requests for Potentially Nonbeneficial Treatment in Life-Threatening Situations: Technical Report
Levine D, Laventhal N, Macauley R · Pediatrics · 2026
Rights of the Dying Child: The Nurses' Perception
Lazzarin P, Marinelli E, Orzalesi M, Brugnaro L, Benini F · Journal of Palliative Medicine · 2018
Scandinavian perspectives on life support at the border of viability
Syltern J · Frontiers in Pediatrics · 2024
Should the Dutch Law on Euthanasia Be Expanded to Include Children?
Verhagen A, Buijsen M · Camb Q Healthc Ethics · 2022
Should We Aspire to Be Rational About Letting Babies Die?
Lantos J · The American Journal of Bioethics · 2022
Surgical interventions for children receiving palliative care: organizational, clinical, and ethical aspects
Ampar F, Afukov I, Vaganov N, Eremin D, Pikin O, Rozinov V · RJPSAR · 2026
Tele-advocacy and Bioethics During the Pandemic: A Telehealth Approach in Perinatal-neonatal Care for Mitigating Ethical and Moral Tensions at a Safety-net Hospital
Perugu S, Rehan V · Journal of Neonatology · 2026
Telling is Caring: Prioritizing the Best Interests of Dying Children
Mosetti S · HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues · 2026
The Bucharest international European Society for Organ Transplantation consensus on paediatric controlled donation after circulatory determination of death
Weiss M, Siebelink M, Cavazzoni E, Figini M, Kazzaz Y, Nadalin S, Nakagawa T, Scales A, Dominguez-Gil B, Oniscu G, Cillo U, Martin D · Transplant International · 2026
The "gray zone" in pediatric end-of-life care: bioethical and medico-legal reflections
Scendoni R, De Micco F · Frontiers in Pediatrics · 2025
The rights of the dying child and the duties of healthcare providers: the "Trieste Charter"
Benini F, Vecchi R, Lazzarin P, Jankovic M, Orsi L, Manfredini L, Drigo P, Sellaroli V, Gangemi M, Spizzichino M, Orzalesi M · Tumori · 2017
The Role of Pediatric Palliative Care Following Nonaccidental Trauma
Henderson T, Graff A, Thorvilson M · J Palliat Med · 2023
The role of the courts in disagreements over the care of seriously ill babies
Griffith R · British journal of nursing · 2017
The Tragic Case of Charlie Gard
Lantos J, Children’s Mercy Bioethics Center C · JAMA Pediatrics · 2017
The weight of words: Language and ethics in pediatric palliative care
Sherburne H, Schiltz B · Palliative & supportive care · 2025
Trauma Informed Ethics Consultation
Lanphier E, Anani U · The American Journal of Bioethics · 2022
Under the Shadow of Ethical Dilemmas: A Qualitative Study of Pediatric Oncology Nurses' End-of-Life Care Experiences
Semerci Sahin R, Akca Sumengen A, Ercan-Koyuncu I, Tekinyildiz E, Gunes E, Savas E, Cakir G, Ay A · Cancer Nursing · 2026
Valuing life and evaluating suffering in infants with life-limiting illness
Wilkinson D, Zayegh A · Theor Med Bioeth · 2020
Walking the Line Between Hope And Hype: Palliative Care in the Era of New and Expensive Neuromuscular Therapies for Children and Adults (TH317)
Noritz G, Feudtner C · Journal of Pain and Symptom Management · 2018
“We decide according to the protocol”: Humanitarian Healthcare Workers’ Moral Experiences of Palliative Care-Related Decision-Making in Cox’s Bazar, Bangladesh
Yantzi R, Hadiuzzaman M, Gupta P, Lamrous A, Richardson K, Pringle J, Schwartz L, Hossain P, Kizito D, Burza S · Prehospital & Disaster Medicine Cambridge University Press May2023 · 2023
Weighing Distress and Benefit: Understanding the Research Participation Experiences of Bereaved Parents of Children With Complex Chronic Conditions
Deming R, Wolfe J, DeCourcey D · J Pain Symptom Manage · 2020
What are the limits of parental authority? Pediatric bioethics and the law
Johnson L, Steuer K, Campbell A, Baker J · Journal of Pain and Symptom Management · 2016
What is the impact of high-profile end-of-life disputes on Paediatric Intensive Care (PIC) trainees? Original research
Bell C, Dittborn M, Brierley J · medRxiv · 2022
When facts are not fixed: rethinking shared decision making at the margins of neonatal viability
Lantos J · BMC medical ethics · 2026
When Is It in a Child's Best Interests to Withhold or Withdraw Life-sustaining Treatment? An Evolving Australian Jurisprudence
Willmott L, White B, Bhatia N · Journal of law and medicine · 2018
Who You Gonna Call? Ethical Conundrums in Pediatric End-of-Life Care
Macauley R, Carter B, Collura C · Journal of Pain & Symptom Management · 2025
Why Are There So Few Ethics Consults in Children's Hospitals?
Carter B, Brockman M, Garrett J, Knackstedt A, Lantos J · HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues · 2018
Why the Individual Provider Approach to Pediatric Palliative Care Consultation Exacerbates Healthcare Disparities: A Moral Argument for Standard Referral Criteria
Gouda S, Hoehn K · The Journal of clinical ethics · 2022
“Yes if… No but…” : a qualitative study of pediatric palliative care professionals and collaborators’ perspectives on medical assistance in dying
Martisella M, Marquis M, Perron C, Bourque C, Bouthillier M · BMC Medical Ethics · 2026

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Resources

Children and Clinical Research external ↗
This course aims to give researchers and members of ethics committees confidence in thinking through the challenges of carrying out research with children and young people.
Essential Elements of Ethics external ↗
This e-Learning resource will guide the development of a dedicated “Ethics section” of the protocol in which these Essential Elements are addressed or cross-referenced to other sections of the protocol.
Ethics Tool Kit external ↗
The purpose of this guidance is to encourage protocol authors to address ethical issues in the design of studies, documenting their rationale, in a section of the protocol easily understood by review boards and investigators.
Introduction to Clinical Research external ↗
The course provides an introductory overview aimed at everyone involved in clinical research and focuses on the main areas of why and how clinical research is carried out, the importance of ethics in research, and an outline of the five main clinical study designs.
Introduction to Informed Consent external ↗
This course places informed consent within its historical context and outlines the regulations, guidelines and processes which arose from this background.
Introduction to Research Ethics external ↗
In this course you will discover, through real-world examples, what ethics means, why it's important, whose responsibility it is, what happens if ethical issues are ignored, and how to be an ethical researcher.
Participant-Centered Informed Consent Training external ↗
Research Ethics Online Training external ↗
Research is a vital ingredient for improved global health, and scientifically sound and ethically appropriate research is especially important in resource-poor settings where the need for locally applicable research findings is so great.

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