Genomics and Precision Health Database

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Query Trace: Informed consent [original query]>>Ethical, Legal and Social Issues (ELSI)[Category]

Publication
'CTRL': an online, Dynamic Consent and participant engagement platform working towards solving the complexities of consent in genomic research. Haas Matilda A et al. European journal of human genetics : EJHG 2021 Jan Similar articles in PubMed
Organoids for personalized treatment of Cystic Fibrosis: Professional perspectives on the ethics and governance of organoid biobanking. Lensink Michael A et al. Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society 2020 Dec Similar articles in PubMed
Assessment of the All of Us research program's informed consent process. Doerr Megan et al. AJOB empirical bioethics 2020 Dec 1-20 Similar articles in PubMed
Feasibility and acceptability of early infant screening for sickle cell disease in Lagos, Nigeria-A pilot study. Oluwole Esther O et al. PloS one 2020 15(12) e0242861 Similar articles in PubMed
Informed consent for genetic testing in hematology. Marron Jonathan M et al. Hematology. American Society of Hematology. Education Program 2020 2020(1) 213-218 Similar articles in PubMed
Reflections on dynamic consent in biomedical research: the story so far. Teare Harriet J A et al. European journal of human genetics : EJHG 2020 Nov Similar articles in PubMed
Participant understanding of informed consent in a multidisease community-based health screening and biobank platform in rural South Africa. Ngwenya Nothando et al. International health 2020 Nov 12(6) 560-566 Similar articles in PubMed
Thought Leader Comparisons of Risks in Precision Medicine Research. Beskow Laura M et al. Ethics & human research 2020 Nov 42(6) 35-40 Similar articles in PubMed
Ethical Considerations about Genomic Medicine Implementation: Lessons Learned from the eMERGE III Study. Inamura Kentaro et al. Journal of personalized medicine 2020 Oct 10(4) Similar articles in PubMed
Potential research ethics violations against an indigenous tribe in Ecuador: a mixed methods approach. Ortiz-Prado Esteban et al. BMC medical ethics 2020 Oct 21(1) 100 Similar articles in PubMed
The Meaning of Informed Consent: Genome Editing Clinical Trials for Sickle Cell Disease. Desine Stacy et al. AJOB empirical bioethics 2020 Oct 1-13 Similar articles in PubMed
Demonstrating 'respect for persons' in clinical research: findings from qualitative interviews with diverse genomics research participants. Kraft Stephanie A et al. Journal of medical ethics 2020 Oct Similar articles in PubMed
As genome-editing trials become more common, informed consent is changing Science Daily, October 12, 2020
Contributory factors to the evolution of the concept and practice of informed consent in clinical research: A narrative review. O'Sullivan Lydia et al. Contemporary clinical trials communications 2020 Sep 19100634 Similar articles in PubMed
Old Challenges or New Issues? Genetic Health Professionals' Experiences Obtaining Informed Consent in Diagnostic Genomic Sequencing. Vears Danya F et al. AJOB empirical bioethics 2020 Oct 1-12 Similar articles in PubMed
Research participant understanding and engagement in an institutional, self-consent biobank model. Schmanski Andrew et al. Journal of genetic counseling 2020 Sep Similar articles in PubMed
Role of a regulatory and governance framework in human biological materials and data sharing in National Biobanks: Case studies from Biobank Integrating Platform, Taiwan and the National Biorepository, Uganda. Nansumba Hellen et al. Wellcome open research 2019 4171 Similar articles in PubMed
Public engagement with genomic medicine: a summary of town hall discussions. Etchegary Holly et al. Journal of community genetics 2020 Aug Similar articles in PubMed
Ethical Questions Concerning Newborn Genetic Screening. Esquerda Montse et al. Clinical genetics 2020 Aug Similar articles in PubMed
The ethics of deferred consent in times of pandemics RVD Graaf et al, Nature Medicine, July 10, 2020
Genetic Privacy and Data Protection: A Review of Chinese Direct-to-Consumer Genetic Test Services. Du Li et al. Frontiers in genetics 2020 11416 Similar articles in PubMed
Developing model biobanking consent language: what matters to prospective participants? Beskow Laura M et al. BMC medical research methodology 2020 May 20(1) 119 Similar articles in PubMed
Dynamic-informed consent: A potential solution for ethical dilemmas in population sequencing initiatives. Dankar Fida K et al. Computational and structural biotechnology journal 2020 18913-921 Similar articles in PubMed
International consensus: ovarian tissue cryopreservation in young Turner syndrome patients: outcomes of an ethical Delphi study including 55 experts from 16 different countries. Schleedoorn M J et al. Human reproduction (Oxford, England) 2020 Apr Similar articles in PubMed
Genetic testing for neurodegenerative diseases: Ethical and health communication challenges. Roberts J Scott et al. Neurobiology of disease 2020 Apr 104871 Similar articles in PubMed
Budgets versus Bans: How U.S. Law Restricts Germline Gene Editing. Johnston Josephine et al. The Hastings Center report 2020 Mar 50(2) 4-5 Similar articles in PubMed
Pioneering Informed Consent for Return of Research Results to Breast Cancer Patients Facing Barriers to Implementation of Genomic Medicine: The Kenyan BRCA1/2 Testing Experience Using Whole Exome Sequencing. Torrorey-Sawe Rispah et al. Frontiers in genetics 2020 11170 Similar articles in PubMed
Informed Consent Form Challenges for Genetic Research in Jordan. Alkaraki Almuthanna K et al. Journal of multidisciplinary healthcare 2020 13235-239 Similar articles in PubMed
"My Research Is Their Business, but I'm Not Their Business": Patient and Clinician Perspectives on Commercialization of Precision Oncology Data. Spector-Bagdady Kayte et al. The oncologist 2020 Mar Similar articles in PubMed
User-focused data sharing agreements: a foundation for the genomic future. Petersen Carolyn et al. JAMIA open 2019 Dec 2(4) 402-406 Similar articles in PubMed