Behavior [Ethical, Legal and Social Issues (ELSI)]

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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
Raw Genomic Data: Storage, Access, and Sharing. Shabani Mahsa et al. Trends in genetics : TIG 2018 34(1) 8-10 Similar articles in PubMed
How Sensitive Is Genetic Data? Sariyar Murat et al. Biopreservation and biobanking 2017 Dec 15(6) 494-501 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
Disclosure of Individual Research Results and Incidental Findings in Biobank Research: Why We Need an Evidence-based Approach. Fleming Jennifer et al. Journal of law and medicine 24(1) 89-95 Similar articles in PubMed
South Korea: in the midst of a privacy reform centered on data sharing. Kim Hannah et al. Human genetics 2018 Aug 137(8) 627-635 Similar articles in PubMed
Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream? Townend David et al. Human genetics 2018 Aug 137(8) 657-664 Similar articles in PubMed
Balancing the local and the universal in maintaining ethical access to a genomics biobank. Heeney Catherine et al. BMC medical ethics 2017 18(1) 80 Similar articles in PubMed
Genomic data sharing: the Australian context. Eckstein Lisa et al. Human genetics 2018 Aug Similar articles in PubMed
Development of Plain Language Supplemental Materials for the Biobank Informed Consent Process. Drake Bettina F et al. Journal of cancer education : the official journal of the American Association for Cancer Education 2017 Dec 32(4) 836-844 Similar articles in PubMed
United Kingdom: transfers of genomic data to third countries. Taylor M J et al. Human genetics 2018 Aug Similar articles in PubMed
United States: law and policy concerning transfer of genomic data to third countries. Majumder Mary Anderlik et al. Human genetics 2018 Aug Similar articles in PubMed
Sharing data under the 21st Century Cures Act. Majumder Mary A et al. Genetics in medicine : official journal of the American College of Medical Genetics 2017 Dec 19(12) 1289-1294 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
[What if the sperm donor has a hereditary disease? Informed consent needed for sharing medical information]. van der Smagt J J et al. Nederlands tijdschrift voor geneeskunde 2017 161(0) D1445 Similar articles in PubMed
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
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
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
Data Sharing For Precision Medicine: Policy Lessons And Future Directions. Blasimme Alessandro et al. Health affairs (Project Hope) 2018 May 37(5) 702-709 Similar articles in PubMed
Your genome may have already been hacked  The Conversation, Apr 30, 2018
Public variant databases: liability? Thorogood Adrian et al. Genetics in medicine : official journal of the American College of Medical Genetics 2017 Jul 19(7) 838-841 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
Alerting relatives about heritable risks: the limits of confidentiality. Lucassen Anneke et al. BMJ (Clinical research ed.) 2018 Apr 361k1409 Similar articles in PubMed
How Genetics Is Changing Our Understanding of ‘Race’  D Reich, New York Times, Mar 23, 2018
Rethink public engagement for gene editing. Burall Simon, et al. Nature 2018 3 0. (7697) 438-439 Similar articles in PubMed
Your DNA, Your Say. Middleton Anna et al. The New bioethics : a multidisciplinary journal of biotechnology and the body 2017 Apr 23(1) 74-80 Similar articles in PubMed
Communicating Identifiability Risks to Biobank Donors. Kasperbauer T J et al. Cambridge quarterly of healthcare ethics : CQ : the international journal of healthcare ethics committees 2018 Jan 27(1) 123-136 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
Perceptions of legislation relating to the sharing of genomic biobank results with donors-a survey of BBMRI-ERIC biobanks. Brunfeldt Minna et al. European journal of human genetics : EJHG 2018 Jan Similar articles in PubMed
Conflicts of interest in genetic counseling: addressing and delivering. Iacoboni Daniela et al. Genetics in medicine : official journal of the American College of Medical Genetics 2018 Jan Similar articles in PubMed
Mitochondrial donation and 'the right to know'. Brandt Reuven et al. Journal of medical ethics 2016 Oct 42(10) 678-84 Similar articles in PubMed
Right to know and right to ignore in paediatric oncogenetics: Identifying biological causes, or seeking for meaning? Bourdeaut Franck et al. European journal of cancer (Oxford, England : 1990) 2016 6353-4 Similar articles in PubMed
Genomics England's implementation of its public engagement strategy: Blurred boundaries between engagement for the United Kingdom's 100,000 Genomes project and the need for public support. Samuel Gabrielle Natalie et al. Public understanding of science (Bristol, England) 2017 Dec 963662517747200 Similar articles in PubMed
Narrative Identity in Third Party Reproduction: Normative Aspects and Ethical Challenges. Lima Natacha Salomé et al. Journal of bioethical inquiry 2017 Dec Similar articles in PubMed
"You want the right amount of oversight": interviews with data access committee members and experts on genomic data access. Shabani Mahsa et al. Genetics in medicine : official journal of the American College of Medical Genetics 2016 Sep 18(9) 892-7 Similar articles in PubMed
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
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
Does a duty of disclosure foster special treatment of genetic research participants? Hayeems Robin Z et al. Journal of genetic counseling 2013 Oct 22(5) 654-61 Similar articles in PubMed
An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots. Rothwell Erin et al. Journal of empirical research on human research ethics : JERHRE 2017 Oct 1556264617736199 Similar articles in PubMed
Considering the Benefits and Risks of Research Participants' Access to Sequence Data. Haga Susanne B et al. Genetic testing and molecular biomarkers 2017 Oct Similar articles in PubMed
Cousins, Genetic Diagnosis and Liability of Clinicians: Smith & Another v University of Leicester NHS Trust [2016] EWHC 817 (QB). Fay Michael et al. Medical law review 2017 Jul Similar articles in PubMed
Navigating social and ethical challenges of biobanking for human microbiome research. Chuong Kim H et al. BMC medical ethics 2017 Jan 18(1) 1 Similar articles in PubMed
Scanning the body, sequencing the genome: Dealing with unsolicited findings. Wouters Roel H P et al. Bioethics 2017 Oct Similar articles in PubMed
Genomic medicine and data sharing. Raza Sobia et al. British medical bulletin 2017 Sep 123(1) 35-45 Similar articles in PubMed
Impact of HIPAA's minimum necessary standard on genomic data sharing. Evans Barbara J et al. Genetics in medicine : official journal of the American College of Medical Genetics 2017 Sep Similar articles in PubMed
"That is why I have trust": unpacking what 'trust' means to participants in international genetic research in Pakistan and Denmark. Sheikh Zainab et al. Medicine, health care, and philosophy 2017 Sep Similar articles in PubMed
Falling giants and the rise of gene editing: ethics, private interests and the public good. Capps Benjamin et al. Human genomics 2017 Aug 11(1) 20 Similar articles in PubMed
Oversight of Genomic Data Sharing: What Roles for Ethics and Data Access Committees? Shabani Mahsa et al. Biopreservation and biobanking 2017 Aug Similar articles in PubMed
Endogenous information, adverse selection, and prevention: Implications for genetic testing policy. Peter Richard et al. Journal of health economics 2017 Jul Similar articles in PubMed
Controlling the signal: Practical privacy protection of genomic data sharing through Beacon services. Wan Zhiyu et al. BMC medical genomics 2017 Jul 10(Suppl 2) 39 Similar articles in PubMed
A Culture of Understanding: Reflections and Suggestions from a Genomics Research Community Board. Kaplan Benjamin et al. Progress in community health partnerships : research, education, and action 2017 11(2) 161-165 Similar articles in PubMed
Security controls in an integrated Biobank to protect privacy in data sharing: rationale and study design. Takai-Igarashi Takako et al. BMC medical informatics and decision making 2017 Jul 17(1) 100 Similar articles in PubMed
The Spillover of Genomic Testing Results in Families: Same Variant, Different Logics. Timmermans Stefan et al. Journal of health and social behavior 2017 Jun 58(2) 166-180 Similar articles in PubMed
Health-Related Genetic Direct-to-Consumer Tests in the German Setting: The Available Offer and the Potential Implications for a Solidarily Financed Health-Care System. Plöthner Marika et al. Public health genomics 2017 Jun Similar articles in PubMed
Defining the Scope of Public Engagement: Examining the "Right Not to Know" in Public Health Genomics. Allen Clarissa et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2014 42(1) 11-8 Similar articles in PubMed
The Right Not to Know and the Duty to Tell: The Case of Relatives. Juth Niklas et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2014 42(1) 38-52 Similar articles in PubMed
Public's Views toward Return of Secondary Results in Genomic Sequencing: It's (Almost) All about the Choice. Ryan Kerry A et al. Journal of genetic counseling 2017 Mar Similar articles in PubMed
A qualitative study of adolescents' understanding of biobanks and their attitudes toward participation, re-contact, and data sharing. Murad Andrea M et al. American journal of medical genetics. Part A 2017 Apr 173(4) 930-937 Similar articles in PubMed
Approaching confidentiality at a familial level in genomic medicine: a focus group study with healthcare professionals. Dheensa Sandi et al. BMJ open 2017 Feb 7(2) e012443 Similar articles in PubMed
Regulation of genomic and biobanking research in Africa: a content analysis of ethics guidelines, policies and procedures from 22 African countries. de Vries Jantina et al. BMC medical ethics 2017 Feb 18(1) 8 Similar articles in PubMed
Access Governance for Biobanks: The Case of the BioSHaRE-EU Cohorts. Kaye Jane et al. Biopreservation and biobanking 2016 Jun 14(3) 201-6 Similar articles in PubMed
An International Framework for Data Sharing: Moving Forward with the Global Alliance for Genomics and Health. Rahimzadeh Vasiliki et al. Biopreservation and biobanking 2016 Jun 14(3) 256-9 Similar articles in PubMed
Incidental findings of uncertain significance: To know or not to know--that is not the question. Hofmann Bjørn et al. BMC medical ethics 2016 Feb 1713 Similar articles in PubMed
Different concepts and models of information for family-relevant genetic findings: comparison and ethical analysis. Lenk Christian et al. Medicine, health care, and philosophy 2015 Aug 18(3) 393-408 Similar articles in PubMed
Ethical signposts for clinical geneticists in secondary variant and incidental finding disclosure discussions. Christenhusz Gabrielle M et al. Medicine, health care, and philosophy 2015 Aug 18(3) 361-70 Similar articles in PubMed
Expanding Access to Large-Scale Genomic Data While Promoting Privacy: A Game Theoretic Approach. Wan Zhiyu et al. American journal of human genetics 2017 Jan Similar articles in PubMed
Access policies in biobank research: what criteria do they include and how publicly available are they? A cross-sectional study. Langhof Holger et al. European journal of human genetics : EJHG 2016 Dec Similar articles in PubMed
The fiduciary relationship model for managing clinical genomic "incidental" findings. Lázaro-Muñoz Gabriel et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2014 42(4) 576-89 Similar articles in PubMed
Predictive Genetic Testing of Children for Adult-Onset Conditions: Negotiating Requests with Parents. Fenwick Angela et al. Journal of genetic counseling 2016 Sep Similar articles in PubMed
Participants' Role Expectations in Genetics Research and Re-consent: Revising the Theory and Methods of Mental Models Research Relating to Roles. Condit Celeste M et al. Journal of health communication 2016 Sep 1-9 Similar articles in PubMed
Am I my Family's Keeper? Disclosure Dilemmas in Next Generation Sequencing. Wouters Roel H P et al. Human mutation 2016 Sep Similar articles in PubMed
Privacy: The myth of anonymity. Savage Neil et al. Nature 2016 537(7619) S70-2 Similar articles in PubMed
Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts. Shabani Mahsa et al. European journal of human genetics : EJHG 2016 Aug Similar articles in PubMed
What can we Learn from Patients' Ethical Thinking about the right 'not to know' in Genomics? Lessons from Cancer Genetic Testing for Genetic Counselling. Cowley Lorraine et al. Bioethics 2016 Aug Similar articles in PubMed
It's Interpersonal: Family Relationships, Genetic Risk, and Caregiving. Koehly Laura M et al. The Gerontologist 2016 Aug Similar articles in PubMed
Is It Desirable that I Must Disclose My Genetic Data to Swiss Private Medical Insurances? Bräm Corina et al. Public health genomics 2016 Aug Similar articles in PubMed
The ethics of conducting molecular autopsies in the cases of sudden death in the young. McGuire Amy et al. Genome research 2016 Jul Similar articles in PubMed
A framework for analyzing the ethics of disclosing genetic research findings. Eckstein Lisa et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2014 42(2) 190-207 Similar articles in PubMed
Disclosure of incidental findings in cancer genomic research: investigators' perceptions on obligations and barriers. Kleiderman E et al. Clinical genetics 2015 Oct 88(4) 320-6 Similar articles in PubMed
The best interests of the child and the return of results in genetic research: international comparative perspectives. Zawati Ma'n H et al. BMC medical ethics 2014 1572 Similar articles in PubMed
Knowing who to trust: exploring the role of 'ethical metadata' in mediating risk of harm in collaborative genomics research in Africa. de Vries Jantina et al. BMC medical ethics 2014 1562 Similar articles in PubMed
GENOMICS. A federated ecosystem for sharing genomic, clinical data. et al. Science (New York, N.Y.) 2016 Jun 352(6291) 1278-80 Similar articles in PubMed
Personal utility in genomic testing: is there such a thing? Bunnik Eline M et al. Journal of medical ethics 2015 Apr 41(4) 322-6 Similar articles in PubMed
Regulations Under the Americans With Disabilities Act; Genetic Information Nondiscrimination Act. Final rule. et al. Federal register 2016 May 81(95) 31125-43 Similar articles in PubMed
Feedback of Individual Genetic Results to Research Participants: Is it Feasible in Europe? Budin-Ljøsne Isabelle et al. Biopreservation and biobanking 2016 Apr Similar articles in PubMed
RESEARCH ETHICS. Ethics review for international data-intensive research. Dove Edward S et al. Science (New York, N.Y.) 2016 Mar 351(6280) 1399-400 Similar articles in PubMed
Direct to consumer genetic testing and the libertarian right to test. Loi Michele et al. Journal of medical ethics 2016 Mar Similar articles in PubMed
Integrating Public Health and Deliberative Public Bioethics: Lessons from the Human Genome Project Ethical, Legal, and Social Implications Program. Meagher Karen M et al. Public health reports (Washington, D.C. : 1974) 131(1) 44-51 Similar articles in PubMed
International Charter of principles for sharing bio-specimens and data. Mascalzoni Deborah et al. European journal of human genetics : EJHG 2015 Jun 23(6) 721-8 Similar articles in PubMed
Automatic Placement of Genomic Research Results in Medical Records: Do Researchers Have a Duty? Should Participants Have a Choice? Prince Anya E R et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2015 Dec 43(4) 827-42 Similar articles in PubMed
Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents. Munung Nchangwi Syntia et al. Journal of medical ethics 2015 Dec Similar articles in PubMed
Attitudes towards the sharing of genetic information with at-risk relatives: results of a quantitative survey. Heaton Timothy J et al. Human genetics 2015 Nov Similar articles in PubMed
A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States. Garrison Nanibaa' A et al. Genetics in medicine : official journal of the American College of Medical Genetics 2015 Nov Similar articles in PubMed
Privacy Risks from Genomic Data-Sharing Beacons. Shringarpure Suyash S et al. American journal of human genetics 2015 Oct Similar articles in PubMed
To disclose, or not to disclose? Context matters. Rahimzadeh Vasiliki et al. European journal of human genetics : EJHG 2015 Mar 23(3) 279-84 Similar articles in PubMed
Data sharing in stem cell translational science: policy statement by the International Stem Cell Forum Ethics Working Party. Bredenoord Annelien L et al. Regenerative medicine 2015 Oct Similar articles in PubMed
Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations. Wolf Susan M et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2015 Sep 43(3) 440-63 Similar articles in PubMed
INTRODUCTION: Return of Research Results: What About the Family? Wolf Susan M et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2015 Sep 43(3) 437-9 Similar articles in PubMed
Considerations for Returning Research Results to Culturally Diverse Participants and Families of Decedents. Garrison Nanibaa'A et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2015 Sep 43(3) 569-75 Similar articles in PubMed