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Precision Health Database


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Rare Diseases

Last data update: Jun 02, 2023. (Total: 60071 Documents since 2012)
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Records 1 - 15 (of 15 Records)

Query Trace: Cystic Fibrosis[original query]>>Ethical, Legal and Social Issues (ELSI)[Category]
The impact of FDA and EMA regulatory decision-making process on the access to CFTR modulators for the treatment of cystic fibrosis.
Costa Enrico et al. Orphanet journal of rare diseases 2022 17(1) 188
Ethical dilemma: ELX/TEZ/IVA or Lung Transplantation in Cystic Fibrosis and End Stage Lung Disease?
Breuer Oded et al. Chest 2021
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 May 6(2)
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
Psychological Impact of NBS for CF.
Chudleigh Jane et al. International journal of neonatal screening 2020 Jun 6(2) 27
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
Why using genetic risk scores on embryos is wrong
E Birney blog, November 11, 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
Bioethicists worried patients couldn?t handle their own genetic testing results. They were (mostly) wrong
E Parens et al, Stat News, July 30, 2019
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
Equitable CF care as a basic human right.
De Boeck Kris et al. Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society 2016 15(6) 703-704
Broad societal debate should inform the use of genome editing in reproduction
S Griffin, BMJ, July 23, 2018
Navigating social and ethical challenges of biobanking for human microbiome research.
Chuong Kim H et al. BMC medical ethics 2017 Jan 18(1) 1
Ethics, genetics and public policies in Uruguay: newborn and infant screening as a paradigm.
Larrandaburu Mariela et al. J Community Genet 2015 May 29.
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