Genomics and Precision Health Database

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

Publication
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
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
Psychological Impact of NBS for CF. Chudleigh Jane et al. International journal of neonatal screening 2020 Jun 6(2) 27 Similar articles in PubMed
Constructing a Bioethical Framework to Evaluate and Optimise Newborn Bloodspot Screening for Cystic Fibrosis. Armstrong Rachael E et al. International journal of neonatal screening 2020 Jun 6(2) 40 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
When Actions Speak Louder Than Words - Racism and Sickle Cell Disease. Power-Hays Alexandra et al. The New England journal of medicine 2020 Sep Similar articles in PubMed
Biobanking for Genomic and Personalized Health Research: Participant Perceptions and Preferences. Barnes Rebecca et al. Biopreservation and biobanking 2020 Apr Similar articles in PubMed
Screening Human Embryos for Polygenic Traits Has Limited Utility. Karavani Ehud et al. Cell 2019 Nov 179(6) 1424-1435.e8 Similar articles in PubMed
Does genetics matter for disease-related stigma? The impact of genetic attribution on stigma associated with rheumatic heart disease in the Western Cape, South Africa. Faure Marlyn C et al. Social science & medicine (1982) 2019 Dec 243112619 Similar articles in PubMed
Why using genetic risk scores on embryos is wrong E Birney blog, November 11, 2019
NIH Director Backs Moratorium for Heritable Genome Editing Gen News, November 8, 2019
Establishing a Multi-Country Sickle Cell Disease Registry in Africa: Ethical Considerations. Munung Nchangwi Syntia et al. Frontiers in genetics 2019 10943 Similar articles in PubMed
To Join Or Not To Join? A Case Of Sickle Cell Clubs, Stigma And Discrimination In Secondary Schools In Butambala District, Uganda. Tusuubira Sharifu K et al. Adolescent health, medicine and therapeutics 2019 10145-152 Similar articles in PubMed
The Anticipatory Politics of Improving Childhood Survival for Sickle Cell Disease. Jae Gina et al. Science, technology & human values 2018 Nov 43(6) 1122-1141 Similar articles in PubMed
How Do We Stop Genetic Medicine From Perpetuating Inequality? E Amsen, the WIRE, August 2019
Is Genetic Medicine Making the World Less Fair? L Hercher, the Nation, August 23, 2019
Why home DNA tests might not be as private as you think C Fox, World Economic Forum, August 9, 2019
Genetic Testing: Who Owns Your Data? Being Patient, August 2, 2019
Genetic-Testing Scam Targets Seniors And Rips Off Medicare M Bailey, KHN News, July 31, 2019
Did CRISPR help - or harm - the first-ever gene-edited babies? J Cohen, Science, August 1, 2019
Bioethicists worried patients couldn?t handle their own genetic testing results. They were (mostly) wrong E Parens et al, Stat News, July 30, 2019
What You Should Know About Insurance Before You Have Genetic Testing E Matloff, Forbes, June 25, 2019
Putting diversity front and center P Ganguly, NHGRI, June 19, 2019
The preimplantation genetic testing debate continues: first the hype, then the tension, now the hypertension? Patounakis George et al. Fertility and sterility 2019 May Similar articles in PubMed
A justice-based argument for including sickle cell disease in CRISPR/Cas9 clinical research. Baffoe-Bonnie Marilyn S et al. Bioethics 2019 May Similar articles in PubMed
A CRISPR focus on attitudes and beliefs toward somatic genome editing from stakeholders within the sickle cell disease community. Persaud Anitra et al. Genetics in medicine : official journal of the American College of Medical Genetics 2018 Dec Similar articles in PubMed
FDA takes new action to advance the development of reliable and beneficial genetic tests that can improve patient care FDA Press Release, December 4, 2018
The "African gene" theory: it is time to stop teaching and promoting the slavery hypertension hypothesis. Lujan Heidi L et al. Advances in physiology education 2018 42(3) 412-416 Similar articles in PubMed
ETHICS EVALUATION REVEALING DECISION-MAKER MOTIVES: A CASE OF NEONATAL SCREENING. Raimond Véronique et al. International journal of technology assessment in health care 2018 Jan 34(2) 189-195 Similar articles in PubMed
Ethical Issues in Contemporary Clinical Genetics. Braverman Genna et al. Mayo Clinic proceedings. Innovations, quality & outcomes 2018 Jun 2(2) 81-90 Similar articles in PubMed