Ethical, Legal and Social Issues (ELSI)

Genomics & Health Impact Scan Database|Search|PHGKB

Publication
A framework for responsibility Nature Medicine, February 6, 2019
Motivations for data sharing-views of research participants from four European countries: A DIRECT study. Shah Nisha et al. European journal of human genetics : EJHG 2019 Jan Similar articles in PubMed
Canadian genetic healthcare professionals' attitudes towards discussing private pay options with patients. Di Gioacchino Vanessa et al. Molecular genetics & genomic medicine 2019 Feb e572 Similar articles in PubMed
Beyond medical actionability: Public perceptions of important actions in response to hypothetical genetic testing results. Seiffert David J et al. Journal of genetic counseling 2019 Feb Similar articles in PubMed
Landscape of granted US patents in personalized diagnostics for oncology from 2014-2018. Ouellette Steven B et al. Expert opinion on therapeutic patents 2019 Feb Similar articles in PubMed
Perspectives on communication and engagement with regard to collecting biospecimens and family health histories for cancer research in a rural Alaska Native community. Dirks Lisa G et al. Journal of community genetics 2019 Jan Similar articles in PubMed
Considerations for Genomic Data Privacy and Security When Working in the Cloud. Carter Alexis B et al. The Journal of molecular diagnostics : JMD 2019 Jan Similar articles in PubMed
The Challenges of Medical Ethics in China: Are Gene-Edited Babies Enough? Ye Zeng Jie et al. Science and engineering ethics 2019 Feb Similar articles in PubMed
[Regulatory agencies of clinical genetic and genomic laboratories in the United States]. Li Lei et al. Zhonghua yi xue yi chuan xue za zhi = Zhonghua yixue yichuanxue zazhi = Chinese journal of medical genetics 2019 Jan 36(1) 23-27 Similar articles in PubMed
Genomic variant sharing: a position statement [version 1; referees: awaiting peer review] Wright CF et al, Wellcome Open Research, 2019
An ethical pathway for gene editing. Savulescu Julian et al. Bioethics 2019 Feb 33(2) 221-222 Similar articles in PubMed
Predicting Public Attitudes Toward Gene Editing of Germlines: The Impact of Moral and Hereditary Concern in Human and Animal Applications. Critchley Christine et al. Frontiers in genetics 2018 9704 Similar articles in PubMed
Beyond the Helix: Ethical, Legal, and Social Implications in Genomics. Hammer Marilyn J et al. Seminars in oncology nursing 2019 Jan Similar articles in PubMed
Should Scientists Toy With the Secret to Life? The gene-editing technology Crispr has the power to remake life as we know it. Questions about how to use it concern everyone.  New York Times Editorial Board, January 28, 2019
Statement from FDA Commissioner Scott Gottlieb, M.D. and Peter Marks, M.D., Ph.D., Director of the Center for Biologics Evaluation and Research on new policies to advance development of safe and effective cell and gene therapies, FDA Statement, January 15, 2019
Genetic Nondiscrimination Laws: What Oncology Nurses Need to Know. Steck Mary Beth et al. Seminars in oncology nursing 2019 Jan Similar articles in PubMed
Molecular Tumor Boards: Ethical Issues in the New Era of Data Medicine. Stoeklé Henri-Corto et al. Science and engineering ethics 2018 24(1) 307-322 Similar articles in PubMed
Ethical Concerns About Human Genetic Enhancement in the Malay Science Fiction Novels. Isa Noor Munirah et al. Science and engineering ethics 2018 24(1) 109-127 Similar articles in PubMed
Personalized medicine should not be restricted to the wealthy. Dunne Colum P et al. Nature 2018 559(7712) 32 Similar articles in PubMed
Risks to relatives in genomic research: a duty to warn? Bombard Yvonne et al. The American journal of bioethics : AJOB 2012 12(10) 12-4 Similar articles in PubMed
Postgenomics and genetic essentialism. Dar-Nimrod Ilan et al. The Behavioral and brain sciences 2012 Oct 35(5) 362-3 Similar articles in PubMed
Call for prudence in whole-genome testing. van El C G et al. Science (New York, N.Y.) 2013 Aug 341(6149) 958-9 Similar articles in PubMed
Genomic medicine and incidental findings: balancing actionability and patient autonomy. McCormick Jennifer B et al. Mayo Clinic proceedings 2014 Jun 89(6) 718-21 Similar articles in PubMed
Personalized Medicine: Is it a concept only for the super-rich? Friedman Joseph H et al. Rhode Island medical journal (2013) 2015 May 98(5) 7-8 Similar articles in PubMed
DOCTORS' LIABILITY TO THE PATIENT'S RELATIVES IN GENETIC MEDICINE: ABC V St George's Healthcare NHS trust[2015] EWHC 1394 (QB). Gilbar Roy et al. Medical law review 2016 24(1) 112-23 Similar articles in PubMed
Return of individual genomic research results: are laws and policies keeping step? Thorogood Adrian et al. European journal of human genetics : EJHG 2019 Jan Similar articles in PubMed
Indigenous Peoples and genomics: Starting a conversation. Morgan Jenny et al. Journal of genetic counseling 2018 Dec Similar articles in PubMed
Perspectives on gene editing The Harvard Gazette, January 9, 2019
Prohibiting Genetic Discrimination to Promote Science, Health, and Fairness. et al. American journal of human genetics 2019 Jan 104(1) 6-7 Similar articles in PubMed
Return of individual genomic research results: are laws and policies keeping step? A Thorogood et al, EJHG, January 8, 2019
Integrating Genomics into Psychiatric Practice: Ethical and Legal Challenges for Clinicians. Ward Eric T et al. Harvard review of psychiatry 27(1) 53-64 Similar articles in PubMed
Ethical considerations in the application of cell and gene therapies in children. Pepper M S et al. South African medical journal = Suid-Afrikaanse tydskrif vir geneeskunde 2018 Nov 108(12) 1027-1029 Similar articles in PubMed
Rapid Challenges: Ethics and Genomic Neonatal Intensive Care. Gyngell Christopher et al. Pediatrics 2019 Jan 143(Suppl 1) S14-S21 Similar articles in PubMed
Human genome editing: ask whether, not how. Hurlbut J Benjamin et al. Nature 2019 565(7738) 135 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
Experiments that led to the first gene-edited babies: the ethical failings and the urgent need for better governance. Li Jing-Ru et al. Journal of Zhejiang University. Science. B 20(1) 32-38 Similar articles in PubMed
Privacy in the age of medical big data WN Price, Nature Medicine, January 7. 2019
Ethical issues in human germline gene editing: a perspective from China. Zhang Di et al. Monash bioethics review 2018 Dec Similar articles in PubMed
Enabling precision medicine via standard communication of HTS provenance, analysis, and results. Alterovitz Gil et al. PLoS biology 2018 Dec 16(12) e3000099 Similar articles in PubMed
Who Should Regulate Preimplantation Genetic Diagnosis in the United States? Bayefsky Michelle et al. AMA journal of ethics 2018 Dec 20(12) E1160-1167 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
Recontacting clinical genetics patients with reclassified results: equity and policy challenges. Bombard Yvonne et al. European journal of human genetics : EJHG 2018 Dec Similar articles in PubMed
Let Us Assume That Gene Editing is Safe-The Role of Safety Arguments in the Gene Editing Debate. Holm Søren et al. Cambridge quarterly of healthcare ethics : CQ : the international journal of healthcare ethics committees 2019 Jan 28(1) 100-111 Similar articles in PubMed
Can the Thought of Teilhard de Chardin Carry Us Past Current Contentious Discussions of Gene Editing Technologies? Šuleková Mária et al. Cambridge quarterly of healthcare ethics : CQ : the international journal of healthcare ethics committees 2019 Jan 28(1) 62-75 Similar articles in PubMed
Human genome editing: ask whether, not how JB Hurlbut, Nature, January 2, 2019
FDA 2018 Year in Review (and a Few Thoughts on 2019), The National Law Review, January 2, 2019
Genes wide open: Data sharing and the social gradient of genomic privacy. Haeusermann Tobias et al. AJOB empirical bioethics 2018 Dec 1-15 Similar articles in PubMed
Protect NIH's DNA advisory committee. Adelman Zach N et al. Science (New York, N.Y.) 2018 362(6413) 409-410 Similar articles in PubMed
Feasibility of Reidentifying Individuals in Large National Physical Activity Data Sets From Which Protected Health Information Has Been Removed With Use of Machine Learning L Na et al, Network Open, December 2012, 2018
Data mining for health: staking out the ethical territory of digital phenotyping N Martinez-Martin etal, Nature Digital Medicine, December 2018
The ethics of global psychiatric genomics: Multilayered challenges to integrating genomics in global mental health and disability-A position paper of the Oxford Global Initiative in Neuropsychiatric GenEthics (NeuroGenE). Kong Camillia et al. American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics 2018 Dec Similar articles in PubMed
Ethical issues in susceptibility genetic testing for late-onset neurodegenerative diseases. Manrique de Lara Amaranta et al. American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics 2018 Dec Similar articles in PubMed
Overcoming bioethical, legal, and hereditary barriers to mitochondrial replacement therapy in the USA. Pompei Marybeth et al. Journal of assisted reproduction and genetics 2018 Dec Similar articles in PubMed
Human genome editing – the issues explored Sanger Institute, December 20, 2018
Moving towards a cure in genetics: what is needed to bring somatic gene therapy to the clinic MC Cornel et al, Eur J Hum Genetics, December 19, 2018
Genetics, Insurance and Professional Practice: Survey of the Australasian Clinical Genetics Workforce. Tiller Jane et al. Frontiers in public health 2018 6333 Similar articles in PubMed
Gene editing: who should decide? Akabayashi Akira et al. Nature 2018 564(7735) 190 Similar articles in PubMed
A genetically augmented future. Clayton Ellen Wright et al. Nature 2018 Dec 564(7735) S9 Similar articles in PubMed
Before Ordering a Genetic Test Get to Know GINA. Gomella Leonard G et al. The Canadian journal of urology 2018 Dec 25(6) 9569 Similar articles in PubMed
Protecting trust in medical genetics in the new era of forensics C Curtis, Genetics in Medicine, December 18, 2018
Wake-up call from Hong Kong VJ Dzau et al, Science, December 14, 2018
Scientists Say Gene-Edited Babies Claim Is 'Wake-Up Call' For World R Stein, NPR, December 13, 2018
Ethical conundrums in pediatric genomics. Rotz Seth J et al. Hematology. American Society of Hematology. Education Program 2018 Nov 2018(1) 301-306 Similar articles in PubMed
Reasonable expectations of privacy in non-disclosure of familial genetic risk: What is it reasonable to expect? Chico Victoria et al. European journal of medical genetics 2018 Dec Similar articles in PubMed
Baby gene edits could affect a range of traits D Cyranoski, Nature News, December 12, 2018
Ethical issues plagued newly surfaced paper by ‘CRISPR babies’ scientist S Begley, Stat News, December 10, 2018
CRISPR/Cas9 gene-editing: Research technologies, clinical applications and ethical considerations. Memi Fani et al. Seminars in perinatology 2018 Oct 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 Ethics of Heritable Genome Editing-New Considerations in a Controversial Area Adashi EY et al, JAMA,December 3, 2018
How to respond to CRISPR babies- The claims from He Jiankui that he has used gene editing to produce twin girls demand action. A new registry of research is a good start Nature editorial, December 5, 2018
Why Are Scientists So Upset About the First Crispr Babies? G Kolata et al, New York Times, December 5, 2018
Understanding Ownership and Privacy of Genetic Data, by Julian Segert, Harvard University, November 28, 2018
Blockchain-based platforms for genomic data sharing: a de-centralized approach in response to the governance problems? Shabani Mahsa et al. Journal of the American Medical Informatics Association : JAMIA 2018 Nov Similar articles in PubMed
We need a temporary moratorium on using gene editing to create babies P Knoepfler, Stat News, November 3, 2018
Beyond safety questions, gene editing will force us to deal with a moral quandary J Johston, Stat News, November 2018
Genetically Modified People Are Walking Among Us C Zimmer, NY Times, December 2, 2018
First CRISPR babies: 6 questions that remain D Cyranoski, Nature, November 30, 2018
NIH director says there’s work to do on regulating genome editing globally L Fatcher, Stat News, November 29, 2018
The era of human gene-editing may have begun. Why that is worrying The Economist, December 1, 2018
FDA approves ‘precision medicine’ drug for different cancers with same mutation L McGinley, Washington Post, November 26, 2018
Consent for Genetic Biobanking in a Diverse Multisite CKD Cohort. Troost Jonathan P et al. Kidney international reports 2018 Nov 3(6) 1267-1275 Similar articles in PubMed
Attitudes of publics who are unwilling to donate DNA data for research. Middleton Anna et al. European journal of medical genetics 2018 Nov Similar articles in PubMed
Thought leader perspectives on benefits and harms in precision medicine research. Beskow Laura M et al. PloS one 2018 13(11) e0207842 Similar articles in PubMed
Human Genetics Society of Australasia Position Statement: Genetic Testing and Personal Insurance Products in Australia. Newson Ainsley J et al. Twin research and human genetics : the official journal of the International Society for Twin Studies 2018 Nov 1-5 Similar articles in PubMed
After such knowledge D Lowe, Science, November 28, 2018
Statement on Claim of First Gene-Edited Babies by Chinese Researcher NIH director, November 28, 2018
Personalized Medicine and Medicinal Chemistry:Toward a legal framework in the European Union ]. Duardo-Sánchez Aliuska et al. Current topics in medicinal chemistry 2018 Nov Similar articles in PubMed
A burden from birth? Non-invasive prenatal testing and the stigmatization of people with disabilities. Rubeis Giovanni et al. Bioethics 2018 Nov Similar articles in PubMed
The Implications of CRISPR-Cas9 Genome Editing for IR. Perkons Nicholas R et al. Journal of vascular and interventional radiology : JVIR 2018 29(9) 1264-1267.e1 Similar articles in PubMed
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
How the genome-edited babies revelation will affect research D Cyranoski, Nature, November 27, 2018
Facing Backlash, Chinese Scientist Defends Gene-Editing Research On Babies R Stein, NPR, Morning Edition, November 28, 2018
Sparse public data on CRISPR’d embryos leave many questions unanswered S Begley et al, Stat News, November 27, 2018
The Implications of Experimenting with Genetically Edited Babies M Specter, New Yorker, November 27, 2018
Editing Babies? We Need to Learn a Lot More First E Topol, NY Times, November 27, 2018
Genome-edited baby claim provokes international outcry D Cyranoski, Nature, November 26, 2018
Is it time for a universal genetic forensic database? JW Hazel et al, Science, November 22, 2018
Perceived Unfair Treatment by Police, Race, and Telomere Length: A Nashville Community-based Sample of Black and White Men. McFarland Michael J et al. Journal of health and social behavior 2018 Nov 22146518811144 Similar articles in PubMed
Data-Driven Medicine Will Help People — But Can It Do So Equally?  New York Times, November 2018
Genetics Start-Up Wants to Sequence People’s Genomes for Free K Weintrob, Scientific American, November 2018