Ethical, Legal and Social Issues (ELSI) - Rare Diseases [NEW TOPIC PAGE]

Genomics & Health Impact Scan Database|Search|PHGKB

Publication
Meeting Patients' Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues. Gainotti Sabina et al. International journal of environmental research and public health 2018 15(10) Similar articles in PubMed
Leveraging Evidence-Based Public Policy and Advocacy to Advance Newborn Screening in California. Bronstein Max G et al. Pediatrics 2019 Jan Similar articles in PubMed
Opening the "black box" of informed consent appointments for genome sequencing: a multisite observational study. Sanderson Saskia C et al. Genetics in medicine : official journal of the American College of Medical Genetics 2018 Oct Similar articles in PubMed
Innovation for rare diseases and bioethical concerns: A thin thread between medical progress and suffering. Tommasini Alberto et al. World journal of clinical pediatrics 2018 Aug 7(3) 75-82 Similar articles in PubMed
Privacy-Preserving Linkage of Genomic and Clinical Data Sets. Baker Dixie et al. IEEE/ACM transactions on computational biology and bioinformatics 2018 Jul Similar articles in PubMed
FDA Issues Set of Gene Therapy Draft Guidances Global Genes, July 11, 2018
When you have a serious hereditary disease, who has a right to know S Raviv, Mosaic, Wellcome, July 11, 2018
Are Payers Ready To Address The Financial Challenges Associated With Gene Therapy? Health Affairs Blog, June 28, 2018
Ethical concerns on sharing genomic data including patients' family members. Takashima Kyoko et al. BMC medical ethics 2018 Jun 19(1) 61 Similar articles in PubMed
FDA grants orphan drug status to selumetinib for neurofibromatosis type 1 (NF1) treatment NCI Cancer Research, May 2018
Accurate Filtering of Privacy-Sensitive Information in Raw Genomic Data. Decouchant Jérémie et al. Journal of biomedical informatics 2018 Apr Similar articles in PubMed
Next-generation sequencing in clinical practice: from the patients' preferences to the informed consent process. Pélissier A et al. Public health 2016 138157-9 Similar articles in PubMed
A review of international coverage and pricing strategies for personalized medicine and orphan drugs. Degtiar Irina et al. Health policy (Amsterdam, Netherlands) 2017 Sep Similar articles in PubMed
The ethical framework for performing research with rare inherited neurometabolic disease patients. Giannuzzi Viviana et al. European journal of pediatrics 2017 Mar 176(3) 395-405 Similar articles in PubMed
Direct-to-Consumer Genetic Testing and Orphan Drug Development. Mason Matthew et al. Genetic testing and molecular biomarkers 2017 Jul Similar articles in PubMed
Public-Private Partnerships in Cloud-Computing Services in the Context of Genomic Research. Granados Moreno Palmira et al. Frontiers in medicine 2017 43 Similar articles in PubMed
Next generation sequencing: Coping with rare genetic diseases in China. Cram David S et al. Intractable & rare diseases research 2016 Aug 5(3) 140-4 Similar articles in PubMed
Privacy: The myth of anonymity. Savage Neil et al. Nature 2016 537(7619) S70-2 Similar articles in PubMed
The risk of re-identification versus the need to identify individuals in rare disease research. Hansson Mats G et al. European journal of human genetics : EJHG 2016 May Similar articles in PubMed
New consent requirements for newborn screening raise concerns. Yan Wudan et al. Nat. Med. 2015 Jun 4. 21(6) 542-3 Similar articles in PubMed
Ethics, genetics and public policies in Uruguay: newborn and infant screening as a paradigm. Larrandaburu Mariela et al. J Community Genet 2015 May 29. Similar articles in PubMed