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Direct linkAshwin Karnik; Gurjot Malhi; Theodore Ho; Stacy Riffle; Kylie Keller; Soo-Jeong Kim – Journal of Autism and Developmental Disorders, 2025
Purpose: Access to research programs and increased diversity in research enrollment may be key to improving diverse populations' health and healthcare outcomes. To facilitate research recruitment, a Research Registry ("Registry"), a pre-recruitment database, was developed at an urban tertiary Autism Center ("Autism Center"). In…
Descriptors: Autism Spectrum Disorders, Patients, Enrollment, Informed Consent
Davies, Hugh – Research Ethics, 2022
Consent is one necessary foundation for ethical research and it's one of the research ethics committee's major roles to ensure that the consent process meets acceptable standards. Although on Oxford 'A' REC (an NHS Research Ethics Committee based in the UK) we've been impressed by the thought and work put into this aspect of research ethics, we've…
Descriptors: Ethics, Informed Consent, Research, Foreign Countries
Joyce El-Haddad; Nalini Pather – Anatomical Sciences Education, 2024
The management of human fetal and embryological collections presents an ethical challenge that can be explored from different perspectives, particularly when considering informed consent. The "micro ethics" level focuses on parties engaged in giving and receiving human tissue while the "macro ethics" level focusses on the…
Descriptors: Donors, Ethics, Informed Consent, Human Body
Bradfield, Owen M. – Research Ethics, 2022
In today's online data-driven world, people constantly shed data and deposit digital footprints. When individuals access health services, governments and health providers collect and store large volumes of health information about people that can later be retrieved, linked and analysed for research purposes. This can lead to new discoveries in…
Descriptors: Data, Health, Ethics, Informed Consent
Davies, Hugh; Munday, Rosie; O'Reilly, Maeve; Hamilton, Catriona Gilmour; Ardahan, Arzhang; Kolstoe, Simon E.; Gillies, Katie – Research Ethics, 2023
Research consent processes must provide potential participants with the necessary information to help them decide if they wish to join a study. On the Oxford 'A' Research Ethics Committee we've found that current research proposals mostly provide adequate detail (even if not in an easily comprehensible format), but often fail to support decision…
Descriptors: Research, Informed Consent, Participation, Decision Making
Aurini, Janice; Iafolla, Vanessa – Research Ethics, 2023
We draw on three illustrative vignettes to examine how REBs manage participants' agency in the context of qualitative research. We ask: Who owns a participant's consent? Central to informed consent is the principle of "Respect for Persons," which privileges the autonomy of individuals to make decisions about what happens (or not) to…
Descriptors: Research, Ethics, Qualitative Research, Participation
Zeinab Mohammed; Fatma Abdelgawad; Mamoun Ahram; Maha E. Ibrahim; Alya Elgamri; Ehsan Gamel; Latifa Adarmouch; Karima El Rhazi; Samar Abd ElHafeez; Henry Silverman – Research Ethics, 2024
Members of research ethics committees (RECs) face a number of ethical challenges when reviewing genomic research. These include issues regarding the content and type of consent, the return of individual research results, mechanisms of sharing specimens and health data, and appropriate community engagement efforts. This article presents the…
Descriptors: Research, Ethics, Committees, Attitudes
Mari-Liisa Parder; Pieter Gryffroy; Marten Juurik – Research Ethics, 2024
The growing importance of researching online activities, such as cyber-deviance and cyber-crime, as well as the use of online tools (e.g. questionnaires, games, and other interactive tools) has created new ethical and legal challenges for researchers, which can be even more complicated when researching adolescents. In this article, we highlight…
Descriptors: Foreign Countries, Crime Prevention, Ethics, Computer Security
Katherine Yaw; Luke Plonsky; Tove Larsson; Scott Sterling; Merja Kytö – Language Teaching, 2023
For many researchers in the social sciences, including those in applied linguistics, the term ethics evokes the bureaucratic process of fulfilling the requirements of an ethics review board (e.g., in the US, an Institutional Review Board, or IRB) as a preliminary step in conducting human subjects research. The expansion of ethics review boards…
Descriptors: Applied Linguistics, Ethics, Research Methodology, Social Sciences
Westcott, Jordan B.; Epstein, Dryden; Wiley, Benjamin; Westcott, Jess M.; Welfare, Laura E.; Catalano, Chase – Counselor Education and Supervision, 2023
Sexual orientation is often invisible in counseling research despite increasing LGBQ+ identity in the United States. We used consensual qualitative research to explore considerations from LGBQ+ counseling researchers for collecting sexual orientation. Three domains emerged: risks, benefits, and methodological considerations. Our findings highlight…
Descriptors: Counseling, Counselor Training, Sexual Orientation, Research
Download full textNewcombe, Nicolina – Waikato Journal of Education, 2022
Obtaining ethical approval for my PhD research with adults with learning (intellectual) disabilities presented an unexpected challenge of learning to work with two sets of guidance: the United Nations Convention on the Rights of Persons with Disabilities (CRPD), and the Ethical Conduct in Human Research and Related Activities Regulations (HRR).…
Descriptors: Ethics, Adults, Intellectual Disability, Civil Rights
Gjermestad, Anita; Skarsaune, Synne N.; Bartlett, Ruth L. – Journal of Intellectual Disabilities, 2023
People with profound and multiple learning disabilities are often excluded from the processes of knowledge production and face barriers to inclusion in research due to cognitive and communicative challenges. Inclusive research--even when intending to be inclusive--tends to operate within criteria that exclude people with profound and multiple…
Descriptors: Severe Intellectual Disability, Inclusion, Research, Interpersonal Communication
Dalton-Brown, Sally – Research Ethics, 2022
Learning about research ethics and research integrity is greatly facilitated by case studies, which illuminate, ground and personalise abstract questions. This paper argues that fiction can provide similar learning experiences, incarnating ethical dilemmas through a medium that is highly accessible yet sophisticated in its depictions of how…
Descriptors: Ethics, Research, Fiction, Animals
Mary Bottomley; Jodie Bradley; Lisa Clark; Bryan Collis; Bojana Daw Srdanovic; Victoria Farnsworth; Annie Ferguson; Dan Goodley; Andrew Fox; Nikita K. Hayden; Charlotte Lawthom; Rebecca Lawthom; Claudia Magwood; Robert McLean; Ian Middleton; Alison Owen; Matty Prothero; Simon Rice; Simon Richards; Katherine Runswick-Cole; Kelly Scargill; Rohit Shankar; Toni Ann Wood – British Journal of Learning Disabilities, 2024
Background: We are a research team of clinical, academic and advocacy-based researchers with and without learning disabilities, working on the "Humanising Healthcare" (for people with learning disabilities) project. The project is dedicated to finding and sharing healthcare practices that enhance the lives of people with learning…
Descriptors: Ethics, Learning Disabilities, Guidelines, Researchers
Traianou, Anna; Hammersley, Martyn – International Journal of Social Research Methodology, 2021
It is widely assumed that researchers must normally secure informed consent from participants if research is to be ethical. But what exactly are people being asked to consent to? Most obviously, it is to supplying, or providing access to, data; but are they also agreeing that this data can be used in any way relevant to the research, or do they…
Descriptors: Research, Informed Consent, Civil Rights, Personal Autonomy
