Ethical, Legal and Social Issues (ELSI) - Genetic testing [NEW TOPIC PAGE]

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Ensuring privacy and security of genomic data and functionalities. Mohammed Yakubu Abukari et al. Briefings in bioinformatics 2019 Feb 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
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
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
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
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
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
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
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
FDA approves ‘precision medicine’ drug for different cancers with same mutation L McGinley, Washington Post, November 26, 2018
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
Comparative perspectives: regulating insurer use of genetic information. Prince Anya E R et al. European journal of human genetics : EJHG 2018 Nov Similar articles in PubMed
Direct-to-Consumer Tests with Marketing Authorization FDA, 2018
Genetic Testing in Dermatology: Bioethics and Health Policy Implications. Wang Jordan V et al. Skinmed 2018 16(5) 356-358 Similar articles in PubMed
[Legal aspects of genetic testing for diagnostic purposes in France]. Zordan Cécile et al. Medecine sciences : M/S 2018 Nov 34 Hors série n°213-15 Similar articles in PubMed
Providing Unrestricted Access to Prenatal Testing Does Not Translate to Enhanced Autonomy. Ravitsky Vardit et al. The American journal of bioethics : AJOB 2017 17(1) 39-41 Similar articles in PubMed
A systematic literature review of individuals' perspectives on privacy and genetic information in the United States. Clayton Ellen W et al. PloS one 2018 13(10) e0204417 Similar articles in PubMed
Genetic Information Nondiscrimination Act and the Affordable Care Act: When Two Is Better Than One. Rich Kelly et al. Genetic testing and molecular biomarkers 2018 Jun 22(6) 331-332 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
Assessing the Value of Next-Generation Sequencing Tests in a Dynamic Environment. Burris Howard A et al. American Society of Clinical Oncology educational book. American Society of Clinical Oncology. Annual Meeting 2018 May (38) 139-146 Similar articles in PubMed
ClinGen's GenomeConnect registry enables patient-centered data sharing. Savatt Juliann M et al. Human mutation 2018 Nov 39(11) 1668-1676 Similar articles in PubMed
‘Everyone Will Be Potentially Identifiable’: Booming DNA Testing Means No Identity Is Hidden on the Web KV Brown, Bloomberg News, October 11, 2018
Ethical Considerations in Neurogenetic Testing. Su Xiaowei W et al. Seminars in neurology 2018 Oct 38(5) 505-514 Similar articles in PubMed
Patients v. Myriad or the GDPR Access Right v. the EU Database Right. Bovenberg Jasper A et al. European journal of human genetics : EJHG 2018 Sep Similar articles in PubMed
Personalized Medicine in the Information Age: Myriad's De Facto Monopoly on Breast Cancer Research. Oliver Angela M et al. SMU law review : a publication of Southern Methodist University School of Law 68(2) 537-66 Similar articles in PubMed
The Legal Vacuum Surrounding Access to Gene-based Research Materials and Data. Nicol Dianne et al. Journal of law and medicine 24(1) 72-88 Similar articles in PubMed
Regulation of Non-consensual Genetic Testing in Australia: Use of Samples from Deceased Persons. McWhirter Rebekah E et al. Journal of law and medicine 24(1) 150-65 Similar articles in PubMed
Ethical considerations in the implementation of nutrigenetics/nutrigenomics. Hurlimann Thierry et al. Personalized medicine 2017 14(1) 75-83 Similar articles in PubMed
Beyond the Genetic Information Nondiscrimination Act: ethical and economic implications of the exclusion of disability, long-term care and life insurance. Tenenbaum Jessica D et al. Personalized medicine 2017 14(2) 153-157 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
Disclosure of sex when incidentally revealed as part of preimplantation genetic testing (PGT): an Ethics Committee opinion. et al. Fertility and sterility 2018 Sep 110(4) 625-627 Similar articles in PubMed
Privacy and genetic genealogy data. Greytak Ellen M et al. Science (New York, N.Y.) 2018 361(6405) 857 Similar articles in PubMed
You Discovered Your Genetic History. Is It Worth the Privacy Risk? M Rodriguez, Fortune, September 10, 2018
Genetic Risk in Insurance Field. Bin Paola et al. Open medicine (Warsaw, Poland) 2018 13294-297 Similar articles in PubMed
Ethical and Counseling Challenges in Prenatal Exome Sequencing. Harris Sarah et al. Prenatal diagnosis 2018 Sep Similar articles in PubMed
The ethics conundrum in Recall by Genotype (RbG) research: Perspectives from birth cohort participants. Minion Joel T et al. PloS one 2018 13(8) e0202502 Similar articles in PubMed
Reuniting Families Using Genetic Testing? Oliphant Erin N et al. Genetic testing and molecular biomarkers 2018 Aug 22(8) 453-455 Similar articles in PubMed
The promise and peril of genetic testing and personalized medicine, MPR News, August 16, 2018
Ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries: a systematic review. Zhong Adrina et al. Genetics in medicine : official journal of the American College of Medical Genetics 2018 Aug Similar articles in PubMed
Genetic Tests Can Hurt Your Chances Of Getting Some Types Of Insurance M Andrews, NPR, August 7, 2018
Concerns Mount over Data Privacy Guidelines Set by Genetic-Testing Companies, by Kristen V. Brown, Insurance Journal, August 3, 2018
Privacy best practices for consumer genetic testing services Future of Privacy Forum, July 31, 2018
The Price of Precision: Genetic Testing and Drug Costs in America. Rich Kelly et al. Genetic testing and molecular biomarkers 2018 Jul 22(7) 403-404 Similar articles in PubMed
Broad societal debate should inform the use of genome editing in reproduction S Griffin, BMJ, July 23, 2018
Genetic Testing: Ethical Aspects. Bin Paola et al. Open medicine (Warsaw, Poland) 2018 13247-252 Similar articles in PubMed
When you have a serious hereditary disease, who has a right to know S Raviv, Mosaic, Wellcome, July 11, 2018
Taming the Gene Genie. Greene Jan et al. Managed care (Langhorne, Pa.) 2018 Jul 27(7) 12-15 Similar articles in PubMed
Human genome editing is not unethical, says Nuffield Council N Hawkes, BMJ, July 17, 2018
Separating Risk Assessment from Risk Management Poses Legal and Ethical Problems in Person-Centred Care. Kaltoft Mette Kjer et al. Studies in health technology and informatics 2018 25123-26 Similar articles in PubMed
Ethics in genetic counselling. Clarke Angus J et al. Journal of community genetics 2018 Jun Similar articles in PubMed
Banning Abortion in Cases of Down Syndrome: Important Lessons for Advances in Genetic Diagnosis. Reingold Rebecca B et al. JAMA 2018 Jun 319(23) 2375-2376 Similar articles in PubMed
Racism Plays into Concerns About Genomic Info J Frieden, Medpage Today, June 28, 2018
Genomic information and a person's right not to know: A closer look at variations in hypothetical informational preferences in a German sample. Flatau Laura et al. PloS one 2018 13(6) e0198249 Similar articles in PubMed
Insurance coverage for genomic tests. Phillips Kathryn A et al. Science (New York, N.Y.) 2018 Apr 360(6386) 278-279 Similar articles in PubMed
Deleting your online DNA data is brutally difficult KV Brown, Bloomberg News, June 15, 2018
Lawmakers press genetic testing companies for details on their privacy policies,  by Megan Thielking, STAT, June 21, 2018
First, do no harm: direct-to-consumer genetic testing. Schleit Jennifer et al. Genetics in medicine : official journal of the American College of Medical Genetics 2018 Jun Similar articles in PubMed
5 biggest risks of sharing your DNA with consumer genetic-testing companies CNBC, June 16, 2018
Privacy and consumer genetic testing don’t always mix K Martin, Science News, June 5, 2018
Medicine, market and communication: ethical considerations in regard to persuasive communication in direct-to-consumer genetic testing services. Schaper Manuel et al. BMC medical ethics 2018 Jun 19(1) 56 Similar articles in PubMed
"It's our DNA, we deserve the right to test!" A content analysis of a petition for the right to access direct-to-consumer genetic testing. Su Yeyang et al. Personalized medicine 2013 Sep 10(7) 729-739 Similar articles in PubMed
Current ethical and legal issues in health-related direct-to-consumer genetic testing. Niemiec Emilia et al. Personalized medicine 2017 Sep 14(5) 433-445 Similar articles in PubMed
Direct-to-Consumer Genetic Testing: The Implications of the US FDA's First Marketing Authorization for BRCA Mutation Testing. Gill Jennifer, et al. JAMA 2018 6 0. (23) 2377-2378 Similar articles in PubMed
Is Your Genome Really Your Own? The Public and Forensic Value of DNA Frontline Genomics, May 3, 2018
Cancer, Our Genes, And The Anxiety Of Risk-Based Medicine. Mukherjee Siddhartha et al. Health affairs (Project Hope) 2018 May 37(5) 817-820 Similar articles in PubMed
Is it research or is it clinical? Revisiting an old frontier through the lens of next-generation sequencing technologies. Bertier Gabrielle et al. European journal of medical genetics 2018 Apr Similar articles in PubMed
Your genome may have already been hacked  The Conversation, Apr 30, 2018
Using a genetic test result in the care of family members: how does the duty of confidentiality apply? Parker Michael et al. European journal of human genetics : EJHG 2018 Apr Similar articles in PubMed
Ethical Guidelines for Genetic Research on Alcohol Addiction and Its Applications. Chapman Audrey R et al. Kennedy Institute of Ethics journal 2018 28(1) 1-22 Similar articles in PubMed
The FDA says you can now test yourself for cancer at home without a doctor. Here's why you shouldn't.  D Ropeik, NBC News Blog, Mar 23, 2018
The Right Not to Know: When Ignorance Is Bliss but Deadly AM Clausen, Pultizer Center, Mar 20, 2018
Is direct-to-consumer genetic testing reifying race?  T Caulfield, the Cure, Mar 22, 2018
The human genome as "common good". Vesto Aurora et al. The journal of maternal-fetal & neonatal medicine : the official journal of the European Association of Perinatal Medicine, the Federation of Asia and Oceania Perinatal Societies, the International Society of Perinatal Obstetricians 2017 Jul 30(13) 1520-1523 Similar articles in PubMed
Opinion: No, FDA Didn’t Really Approve BRCA Test-Rather, the breast cancer mutation screen was classified as a type of medical device with obligations for the company to reduce risks to customers.  C Janssens, The Scientist, Mar 19, 2018
The direct-to-consumer genetics debate. Kill Andy et al. The Lancet. Oncology 2016 17(7) e265 Similar articles in PubMed
Regulation of Internet-based Genetic Testing: Challenges for Australia and Other Jurisdictions. Tiller Jane et al. Frontiers in public health 2018 624 Similar articles in PubMed
Key Ethical Issues in Prenatal Genetics: An Overview. Farrell Ruth M et al. Obstetrics and gynecology clinics of North America 2018 Mar 45(1) 127-141 Similar articles in PubMed
Genetic Testing between Private and Public Interests: Some Legal and Ethical Reflections. Sándor Judit et al. Frontiers in public health 2018 68 Similar articles in PubMed
Privacy Challenges of Genomic Big Data. Shen Hong et al. Advances in experimental medicine and biology 2017 1028139-148 Similar articles in PubMed
Seen At 11: Genetic Testing Results Could Prevent Users From Getting Insurance, CBS New York, February 7, 2018
The Ethics of General Population Preventive Genomic Sequencing: Rights and Social Justice. Morrissey Clair et al. The Journal of medicine and philosophy 2018 Jan 43(1) 22-43 Similar articles in PubMed
Should Australia Ban the Use of Genetic Test Results in Life Insurance? Tiller Jane et al. Frontiers in public health 2017 5330 Similar articles in PubMed
Strengthen federal regulation of laboratory-developed and direct-to-consumer genetic testing. Starkweather Angela R et al. Nursing outlook 2017 Nov Similar articles in PubMed
Ethical issues in neurogenetics. Uhlmann Wendy R et al. Handbook of clinical neurology 2018 14723-36 Similar articles in PubMed
Professional responsibilities regarding the provision, publication, and dissemination of patient phenotypes in the context of clinical genetic and genomic testing: points to consider-a statement of the American College of Medical Genetics and Genomics (ACMG). Bush Lynn W et al. Genetics in medicine : official journal of the American College of Medical Genetics 2018 Jan Similar articles in PubMed
Next-Generation Sequencing and the Return of Results. Knoppers Bartha Maria et al. Cold Spring Harbor perspectives in medicine 2016 Oct 6(10) Similar articles in PubMed
Genetic Discrimination: A Case for a European Legislative Response? de Paor Aisling et al. European journal of health law 2017 Apr 24(2) 135-59 Similar articles in PubMed
Warn patients about privacy issues associated with genetic testing. Reddy Sumana et al. Family practice management 25(1) 34 Similar articles in PubMed
Genetic Testing: Multiple Problems to Solve. Ramos Erica et al. Journal of clinical oncology : official journal of the American Society of Clinical Oncology 2018 Jan JCO2017760942 Similar articles in PubMed
Autonomy, Well-Being, and the Value of Genetic Testing for Adopted Persons. May Thomas et al. HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues 2017 Dec Similar articles in PubMed
Possible barriers for genetic counselors returning actionable genetic research results across state lines. Roberts Megan C et al. Genetics in medicine : official journal of the American College of Medical Genetics 2017 Nov 19(11) 1202-1204 Similar articles in PubMed
Direct-to-consumer genetic testing and privacy, Office of Privacy Commissioner of Canada, December 17
Ethical frameworks for obtaining informed consent in tumour profiling: an evidence-based case for Singapore. Bylstra Yasmin et al. Human genomics 2017 Dec 11(1) 31 Similar articles in PubMed
“Better Not to Know?”: Justifiable Limits on the Right to Information in the Realm of DTC Genetic Testing. An Analysis of the European and Spanish Legal Framework. Martínez Otero Juan María et al. European journal of health law 2017 Apr 24(2) 175-97 Similar articles in PubMed
Insurance for broad genomic tests in oncology. Eisenberg Rebecca et al. Science (New York, N.Y.) 2017 358(6367) 1133-1134 Similar articles in PubMed
Applications of pharmacogenomics in regulatory science: a product life cycle review. Tan-Koi W C et al. The pharmacogenomics journal 2017 Dec Similar articles in PubMed
Huntington's case raises questions about passing gene test results to relatives. Dyer Clare et al. BMJ (Clinical research ed.) 2017 357j2433 Similar articles in PubMed
Psychosocial issues of a population approach to high genetic risk identification: Behavioural, emotional and informed choice issues. French David P et al. Breast (Edinburgh, Scotland) 2017 Nov 37148-153 Similar articles in PubMed
Direct to consumer genetic testing-law and policy concerns in Ireland. de Paor Aisling et al. Irish journal of medical science 2017 Nov Similar articles in PubMed
Ethics and Genetics: Examining a Crossroads in Nursing Through a Case Study . Curr Beamer Laura Curr et al. Clinical journal of oncology nursing 2017 Dec 21(6) 730-737 Similar articles in PubMed