The Abandoned Stakeholders: Pharmaceutical Companies and Research Participants
Sign Up to like & getrecommendations! Published in 2017 at "Journal of Business Ethics"
DOI: 10.1007/s10551-016-3070-5
Abstract: Most discussions concerned with advancing the just and ethical treatment of research participants in developing countries have revolved around the moral principle of autonomy and the legal doctrine of informed consent (O’Neill 2002). However, if… read more here.
Keywords: research; abandoned stakeholders; companies research; pharmaceutical companies ... See more keywords
37 GENOME-WIDE ASSOCIATION STUDY OF ALCOHOL USE DISORDER IDENTIFICATION TEST (AUDIT) SCORES IN AN UNSELECTED COHORT OF 20,328 RESEARCH PARTICIPANTS OF EUROPEAN ANCESTRY: RS41973904 AND BEYOND
Sign Up to like & getrecommendations! Published in 2019 at "European Neuropsychopharmacology"
DOI: 10.1016/j.euroneuro.2017.08.038
Abstract: Background Genetic factors contribute to the risk for developing alcohol use disorder (AUD). Previous studies have estimated the heritability of AUD to be between 40–60% and have explored the role of specific candidate genes, including… read more here.
Keywords: use; audit; alcohol use; use disorder ... See more keywords
Stakeholders’ perspectives on the post-mortem use of genetic and health-related data for research: a systematic review
Sign Up to like & getrecommendations! Published in 2019 at "European Journal of Human Genetics"
DOI: 10.1038/s41431-019-0503-5
Abstract: The majority of biobank policies and consent forms do not address post-mortem use of data for medical research, thus causing uncertainty after research participants’ death. This systematic review identifies studies examining stakeholders’ perspectives on this… read more here.
Keywords: research; research participants; mortem use; post mortem ... See more keywords
Feedback from research participants: are member checks useful in qualitative research?
Sign Up to like & getrecommendations! Published in 2017 at "Qualitative Research in Psychology"
DOI: 10.1080/14780887.2016.1219435
Abstract: ABSTRACT It is often assumed that use of so-called “member checks” improves the credibility of qualitative research. Published literature mentioning member checks was reviewed to identify the purposes and procedures for seeking feedback from research… read more here.
Keywords: research; feedback research; qualitative research; member checks ... See more keywords
Considering the Benefits and Risks of Research Participants' Access to Sequence Data.
Sign Up to like & getrecommendations! Published in 2017 at "Genetic testing and molecular biomarkers"
DOI: 10.1089/gtmb.2017.0143
Abstract: The use of sequencing technologies has greatly expanded in both research and clinical settings. The generation of voluminous datasets has raised several issues regarding data sharing and access. Current regulations require clinical laboratories and some… read more here.
Keywords: research; risks research; access; research participants ... See more keywords
"From Victimhood to Warriors": Super-researchers' Insights Into Alzheimer's Disease Clinical Trial Participation Motivations.
Sign Up to like & getrecommendations! Published in 2019 at "The Gerontologist"
DOI: 10.1093/geront/gnz096
Abstract: BACKGROUND AND OBJECTIVES Recruitment and retention of research participant serve as a significant challenge in the search for ways to slow or prevent Alzheimer's disease. While barriers to participation are well documented, less is known… read more here.
Keywords: research; participation; disease clinical; alzheimer disease ... See more keywords
Sex, racial, and ethnic diversity in clinical trials.
Sign Up to like & getrecommendations! Published in 2023 at "Clinical and translational science"
DOI: 10.1111/cts.13513
Abstract: Diverse representation in clinical trials is crucial to understand the efficacy and safety of drugs in minority groups. This review aims to 1) describe research participants' sex, racial, and ethnic diversity in clinical drug trials… read more here.
Keywords: research participants; sex racial; clinical trials; pharmacology ... See more keywords
Paying patient and caregiver research participants: putting theory into practice
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DOI: 10.1111/jan.13222
Abstract: AIM To review and discuss the ethical and practical considerations about paying patient and caregiver participants in nursing research and, based on this review, to develop a set of guiding principles about payment of participants.… read more here.
Keywords: research; paying patient; payment; patient caregiver ... See more keywords
Return of results and data to study participants
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DOI: 10.1126/science.aav0005
Abstract: A recent report urges progress but builds barriers to research participants' access Researchers conducting imaging, environmental health, and genetics studies have offered participants their research findings for years, publishing data on this experience and producing… read more here.
Keywords: return results; report; data study; results data ... See more keywords
Strategies for recruiting the dependent children of patients with a life-limiting illness as research participants
Sign Up to like & getrecommendations! Published in 2022 at "Palliative Medicine"
DOI: 10.1177/02692163221122302
Abstract: Background: The voices of children and adolescents have historically been substituted by the perspective of adults. There is growing recognition that children ( read more here.
Keywords: research participants; limiting illness; life limiting; illness research ... See more keywords
The ethics of uninsured participants accessing healthcare in biomedical research: A literature review
Sign Up to like & getrecommendations! Published in 2018 at "Clinical Trials"
DOI: 10.1177/1740774518792277
Abstract: Background/aims Sparse literature exists on the challenges and ethical considerations of including people with limited access to healthcare, such as the uninsured and low-income, in clinical research in high-income countries. However, many ethical issues should… read more here.
Keywords: research; income; low income; clinical research ... See more keywords