Ethical, Legal and Social Issues (ELSI)|Search|PHGKB

Genomics & Health Impact Scan Database|Search|PHGKB

From Genomics & Health Impact Scan Database

This database includes published scientific literature on evidence-based translation of genomic discoveries into improved health care and disease prevention that have a potential impact on population health.

---

Get Records

Publication
Understanding Ownership and Privacy of Genetic Data, by Julian Segert, Harvard University, November 28, 2018
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
Is it time for a universal genetic forensic database? JW Hazel et al, Science, November 22, 2018
Protecting Participants, Empowering Researchers: Providing Access to Genomic Summary Results ED Green et al, NHGRI, November 1, 2018
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
Epigenetics: ethics, politics, biosociality. Chiapperino Luca et al. British medical bulletin 2018 Oct 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
Most White Americans’ DNA Can Be Identified Through Genealogy Databases H Murphy, New York Times, October 11, 2018
‘Everyone Will Be Potentially Identifiable’: Booming DNA Testing Means No Identity Is Hidden on the Web KV Brown, Bloomberg News, October 11, 2018
Variant data sharing by clinical laboratories through public databases: consent, privacy and further contact for research policies. Shabani Mahsa et al. Genetics in medicine : official journal of the American College of Medical Genetics 2018 Oct 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
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
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
Community Partnership in Precision Medicine: Themes from a Community Engagement Conference. Jones Loretta et al. Ethnicity & disease 2018 28(Suppl 2) 503-510 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
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
Privacy Safeguards- All of Us uses high quality security technology to help keep participant data safe. All of US Research Program, 2018
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
The Legal Dimensions of Genomic Sequencing in Newborn Screening. Zacharias Rachel L et al. The Hastings Center report 2018 Jul 48 Suppl 2S39-S41 Similar articles in PubMed
Precision medicine and sharing medical data in real time: opportunities and barriers. Yang Y Tony et al. The American journal of managed care 2018 Aug 24(8) 356-358 Similar articles in PubMed
Genomic data sharing: the Australian context. Eckstein Lisa et al. Human genetics 2018 Aug Similar articles in PubMed
Effort to Diversify Medical Research Raises Thorny Questions of Race  M Miller, Scientific American, August 10, 2018
United Kingdom: transfers of genomic data to third countries. Taylor M J et al. Human 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
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
Behind at-home DNA testing companies sharing genetic data with third parties CBS This Morning, August 2, 2018
Concerns Mount over Data Privacy Guidelines Set by Genetic-Testing Companies, by Kristen V. Brown, Insurance Journal, August 3, 2018
Machine learning and genomics: precision medicine versus patient privacy. Azencott C-A et al. Philosophical transactions. Series A, Mathematical, physical, and engineering sciences 2018 Sep 376(2128) 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
Privacy best practices for consumer genetic testing services Future of Privacy Forum, July 31, 2018
23andMe Is Sharing Genetic Data with Drug Giant: The genetics testing company and GlaxoSmithKline are using 5 million people’s data to develop medical treatments
Genomic Privacy. Schwab Abraham P et al. Clinical chemistry 2018 Jul Similar articles in PubMed
On Sharing Intentions, and Personal and Interdependent Privacy Considerations for Genetic Data: A Vignette Study. Weidman Jake et al. IEEE/ACM transactions on computational biology and bioinformatics 2018 Jul Similar articles in PubMed
China: concurring regulation of cross-border genomic data sharing for statist control and individual protection. Chen Yongxi et al. Human genetics 2018 Jul Similar articles in PubMed
Genomic data sharing in Canada: flying under the regulatory radar? Thorogood Adrian et al. Human genetics 2018 Jul Similar articles in PubMed
When you have a serious hereditary disease, who has a right to know S Raviv, Mosaic, Wellcome, July 11, 2018
The UK National DNA Database: Implementation of the Protection of Freedoms Act 2012. Amankwaa Aaron Opoku et al. Forensic science international 2018 Mar 284117-128 Similar articles in PubMed
Changes to the Employers' Use of Genetic Information and Non-discrimination for Health Insurance in the USA: Implications for Australians. Bilkey Gemma A et al. Frontiers in public health 2018 6183 Similar articles in PubMed
The right to know one's genetic origins and cross-border medically assisted reproduction. Ravitsky Vardit et al. Israel journal of health policy research 2017 63 Similar articles in PubMed
Science Wants Your Data MK Baker, Five Thirty Eight, June 25, 2018
Deleting your online DNA data is brutally difficult KV Brown, Bloomberg News, June 15, 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
Lawmakers press genetic testing companies for details on their privacy policies,  by Megan Thielking, STAT, June 21, 2018
I handed over my genetic data to the NIH. Here’s why you should, too E Dishman, All of uS, StatNews, June 13, 2018
"I don't want to be Henrietta Lacks": diverse patient perspectives on donating biospecimens for precision medicine research. Lee Sandra S-J 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
Real-time Protection of Genomic Data Sharing in Beacon Services. Bu Diyue et al. AMIA Joint Summits on Translational Science proceedings. AMIA Joint Summits on Translational Science 2018 201745-54 Similar articles in PubMed
Sociogenetic Risks - Ancestry DNA Testing, Third-Party Identity, and Protection of Privacy. May Thomas et al. The New England journal of medicine 2018 Jun Similar articles in PubMed
Genealogy site MyHeritage says 92 million user accounts compromised M Thielking, StatNews, June 5, 2018
Privacy and consumer genetic testing don’t always mix K Martin, Science News, June 5, 2018
Is Your Genome Really Your Own? The Public and Forensic Value of DNA Frontline Genomics, May 3, 2018
Protecting confidentiality in genomic studies MIT, May 7, 2018
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
Property and human genetic information. Nielsen Morten Ebbe Juul et al. Journal of community genetics 2018 Apr Similar articles in PubMed
NIH seeks health data of 1 million people, with genetic privacy suddenly an issue L Bernstein, Washington Post, May 2, 2018
Your genome may have already been hacked  The Conversation, Apr 30, 2018
Ethics of Genomic Data Sharing: An Interview with Bartha Maria Knoppers Global Alliance for Genomics and Health, Apr 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
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 Right Not to Know: When Ignorance Is Bliss but Deadly AM Clausen, Pultizer Center, Mar 20, 2018
Fostering caring relationships: Suggestions to rethink liberal perspectives on the ethics of newborn screening. van der Burg Simone et al. Bioethics 2018 Mar 32(3) 171-183 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
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
Reconsidering the duty to warn genetically at-risk relatives. Rothstein Mark A et al. Genetics in medicine : official journal of the American College of Medical Genetics 2018 Feb 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
When Personal Feels Invasive: Foreseeing Challenges in Precision Medicine Communication. Ratcliff Chelsea L et al. Journal of health communication 2017 Dec 1-9 Similar articles in PubMed
A community effort to protect genomic data sharing, collaboration and outsourcing. Wang Shuang et al. NPJ genomic medicine 2017 233 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
Direct-to-consumer genetic testing and privacy, Office of Privacy Commissioner of Canada, December 17
“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
Power to the People: Data Citizens in the Age of Precision Medicine. Evans Barbara J et al. Vanderbilt journal of entertainment and technology law 2017 19(2) 243-265 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
Navajo Nation reconsiders ban on genetic research. Reardon Sara, et al. Nature 2017 0 0. (7675) 165-166 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
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
Third party interpretation of raw genetic data: an ethical exploration. Badalato Lauren et al. European journal of human genetics : EJHG 2017 Aug Similar articles in PubMed
Transparency of Biobank Access in Canada: An Assessment of Industry Access and the Availability of Information on Access Policies and Resulting Research. Gibson Shannon G et al. Journal of empirical research on human research ethics : JERHRE 2017 Aug 1556264617723137 Similar articles in PubMed
Direct to consumer genetic testing and the libertarian right to test. Bonython Wendy Elizabeth et al. Journal of medical ethics 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
PRESAGE: PRivacy-preserving gEnetic testing via SoftwAre Guard Extension. Chen Feng et al. BMC medical genomics 2017 Jul 10(Suppl 2) 48 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
Genes, cells, and biobanks: Yes, there's still a consent problem. Caulfield Timothy et al. PLoS biology 2017 Jul 15(7) e2002654 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
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
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
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
Biobank and Genomic Research in Uganda: Are Extant Privacy and Confidentiality Regimes Adequate? Nnamuchi Obiajulu et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2016 Mar 44(1) 85-95 Similar articles in PubMed
Undermining Genetic Privacy? Employee Wellness Programs and the Law KL Hudson et al, NEJM, May 25, 2017
Ethical Legal and Social Issues of Biobanking: Past, Present, and Future. Bledsoe Marianna J et al. Biopreservation and biobanking 2017 Apr Similar articles in PubMed
Ethical Issues Surrounding Personalized Medicine: A Literature Review. Salari Pooneh et al. Acta medica Iranica 2017 Mar 55(3) 209-217 Similar articles in PubMed
Whose Biobank? Should Biobanks Serve Research Interests or the Needs for Personalized Medicine? Analysis of the Hungarian Law. Sándor Judit et al. Genetic testing and molecular biomarkers 2017 Jan 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
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
The human genome as public: Justifications and implications. Bayefsky Michelle J et al. Bioethics 2016 Dec Similar articles in PubMed
The Precision Medicine Initiative's All of Us Research Program: an agenda for research on its ethical, legal, and social issues. Sankar Pamela L et al. Genetics in medicine : official journal of the American College of Medical Genetics 2016 Dec Similar articles in PubMed