Genomics & Health Impact Scan Database|Search|PHGKB

Genomics & Health Impact Scan Database|Search|PHGKB

Genomics and Precision Health Database

Publication
'Genes versus children': if the goal is parenthood, are we using the optimal approach? Kirkman-Brown Jackson C et al. Human reproduction (Oxford, England) 2020 Jan Similar articles in PubMed
The challenges of maintaining genetic privacy. Carmi Shai et al. eLife 2020 Jan 9 Similar articles in PubMed
A review of the legislation of direct-to-consumer genetic testing in EU member states. Hoxhaj Ilda et al. European journal of medical genetics 2020 Jan 103841 Similar articles in PubMed
Exploring broad consent in the context of the 100,000 Genomes Project: a mixed methods study. Ballard Lisa M et al. European journal of human genetics : EJHG 2020 Jan Similar articles in PubMed
Pharmacogenetic Testing: The Ethics of Implementing in Clinical Practice for Chronic Pain Patients. Fredrikson Karin M et al. Journal of pain & palliative care pharmacotherapy 2020 Jan 1-8 Similar articles in PubMed
"Just tell me what's going on": The views of parents of children with genetic conditions regarding the research use of their child's electronic health record. Andrews Sara M et al. Journal of the American Medical Informatics Association : JAMIA 2020 Jan Similar articles in PubMed
Uncovering social structures and informational prejudices to reduce inequity in delivery and uptake of new molecular technologies. Filoche Sara et al. Journal of medical ethics 2020 Jan Similar articles in PubMed
Accounting for diversity in rare disease research and precision medicine. Alawi Faizan et al. Oral surgery, oral medicine, oral pathology and oral radiology 2019 Nov Similar articles in PubMed
What CRISPR-baby prison sentences mean for research. Cyranoski David et al. Nature 2020 577(7789) 154-155 Similar articles in PubMed
Ethics of Human Genome Editing. Coller Barry S et al. Annual review of medicine 2019 70289-305 Similar articles in PubMed
Sharing with Strangers: Governance Models for Borderless Genomic Research in a Territorial World. Juengst Eric T et al. Kennedy Institute of Ethics journal 2019 29(1) 67-95 Similar articles in PubMed
Safeguarding the future of genomic research in South Africa: Broad consent and the Protection of Personal Information Act No. 4 of 2013. Staunton C et al. South African medical journal = Suid-Afrikaanse tydskrif vir geneeskunde 2019 Jun 109(7) 468-470 Similar articles in PubMed
Bioethics and public policies in neonatal screening in the United States, United Kingdom, and Colombia Cifuentes Ricardo et al. Biomedica : revista del Instituto Nacional de Salud 2019 39(1) 132-146 Similar articles in PubMed
Native American groups wary of big U.S. biobank. Kaiser Jocelyn et al. Science (New York, N.Y.) 2019 364(6443) 812-813 Similar articles in PubMed
Implementing a universal informed consent process for the All of Us Research Program. Doerr Megan et al. Pacific Symposium on Biocomputing. Pacific Symposium on Biocomputing 2019 24427-438 Similar articles in PubMed
Attacks on genetic privacy via uploads to genealogical databases MD Edge et al, elife, January 7, 2020
Genealogy: The challenges of maintaining genetic privacy S Carmi, elife, January 7. 2020
Beyond Mendelian Genetics: Anticipatory Biomedical Ethics and Policy Implications for the Use of CRISPR Together with Gene Drive in Humans. Nestor Michael W et al. Journal of bioethical inquiry 2020 Jan Similar articles in PubMed
Broad consent under the GDPR: an optimistic perspective on a bright future. Hallinan Dara et al. Life sciences, society and policy 2020 Jan 16(1) 1 Similar articles in PubMed
Navigating 2020 and beyond Nature Genetics editorial, January 7, 2020
Navigating 2020 and beyond Nature Genetics editorial, January 7, 2020
Navigating 2020 and beyond Nature Genetics editorial, January 7, 2020
The Consent Form in the Chinese CRISPR Study: In Search of Ethical Gene Editing. Shaw David et al. Journal of bioethical inquiry 2020 Jan Similar articles in PubMed
Data Sharing for the Public Good. Helzlsouer Kathy J et al. Journal of the National Cancer Institute 2020 Jan Similar articles in PubMed
Opening Pandora’s Box of a family’s medical secrets: ‘As hard as it is knowing, not knowing is much worse’ A Keshner, Market Watch, January 2020
The Use of Racial Categories in Precision Medicine Research. Callier Shawneequa L et al. Ethnicity & disease 2019 29(Suppl 3) 651-658 Similar articles in PubMed
Ethical and Legal Considerations for the Inclusion of Underserved and Underrepresented Immigrant Populations in Precision Health and Genomic Research in the United States. Wagner Jennifer K et al. Ethnicity & disease 2019 29(Suppl 3) 641-650 Similar articles in PubMed
How Can Law Support Development of Genomics and Precision Medicine to Advance Health Equity and Reduce Disparities? Wolf Susan M et al. Ethnicity & disease 2019 29(Suppl 3) 623-628 Similar articles in PubMed
Black Women's Confidence in the Genetic Information Nondiscrimination Act. Sutton Arnethea L et al. International journal of environmental research and public health 2019 Dec 16(24) Similar articles in PubMed
A survey of U. S. state insurance commissioners concerning genetic testing and life insurance: Redux at 27. Golinghorst Dexter R et al. Journal of genetic counseling 2019 Dec Similar articles in PubMed
From Expectations to Experiences: Consumer Autonomy and Choice in Personal Genomic Testing. Savard Jacqueline et al. AJOB empirical bioethics 2019 Dec 1-14 Similar articles in PubMed
Why Are You Publicly Sharing Your Child’s DNA Information? By uploading their children’s genetic information on public websites, parents are forever exposing their personal health data. N Bala, NY Times, January 2, 2020
Access and Management: Indigenous Perspectives on Genomic Data Sharing. Garrison Nanibaa' A et al. Ethnicity & disease 2019 29(Suppl 3) 659-668 Similar articles in PubMed
Two Threats to Precision Medicine Equity. Matthew Dayna Bowen et al. Ethnicity & disease 2019 29(Suppl 3) 629-640 Similar articles in PubMed
Inequities in newborn screening: Race and the role of medicaid ☆ . Sohn Heeju et al. SSM - population health 2019 Dec 9100496 Similar articles in PubMed
How Should "CRISPRed" Babies Be Monitored Over Their Life Course to Promote Health Equity? Thompson Charis et al. AMA journal of ethics 2019 Dec 21(12) E1036-1041 Similar articles in PubMed
An ethical framework for genetic counseling in the genomic era. Jamal Leila et al. Journal of genetic counseling 2019 Dec Similar articles in PubMed
Evaluating the German Biobank Node as Coordinating Institution of the German Biobank Alliance: Engaging with Stakeholders via Survey Research. Klingler Corinna et al. Biopreservation and biobanking 2019 Dec Similar articles in PubMed
The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies. Fisher Elena R et al. Molecular genetics & genomic medicine 2019 Dec e1099 Similar articles in PubMed
What You’re Unwrapping When You Get a DNA Test for Christmas H Murphy, NY Times, December 22, 2019
Contentious ethical issues in community genetics: let's talk about them. Schmidtke Jörg et al. Journal of community genetics 2019 Dec Similar articles in PubMed
Psychological factors that determine people's willingness-to-share genetic data for research. Bearth Angela et al. Clinical genetics 2019 Dec Similar articles in PubMed
FDA oversight of NSIGHT genomic research: the need for an integrated systems approach to regulation. Milko Laura V et al. NPJ genomic medicine 2019 432 Similar articles in PubMed
Genomic data and the dividual self. McGonigle Ian et al. Genetics research 2019 101e12 Similar articles in PubMed
Law, Genomic Medicine and Health Equity Ethnicity and Disease, suppl 2019
Two Threats to Precision Medicine Equity DB Matthews, Ethnicity and Disease, suppl, 2019
How Can Law Support Development of Genomics and Precision Medicine to Advance Health Equity and Reduce Disparities? SM Wolfe et al, Ethnicity and Disease, suppl 2019
Ethical, Legal, and Social Implications of Human Genomics Research: Past, Present and Future CDC Seminar, January 27, 2020
African American mothers' attitudes towards genetic testing in the InterGEN study. Wright Michelle L et al. Journal of community genetics 2019 Dec Similar articles in PubMed
Precision Medicine: Addressing the Challenges of Sharing, Analysis, and Privacy at Scale. Brenner Steven E et al. Pacific Symposium on Biocomputing. Pacific Symposium on Biocomputing 2020 25547-550 Similar articles in PubMed
When Genetics Meets Religion: What Scientists and Religious Leaders Can Learn from Each Other. Modell Stephen M et al. Public health genomics 2019 Dec 1-15 Similar articles in PubMed
FDA oversight of NSIGHT genomic research: the need for an integrated systems approach to regulation LV MIlko et al, NPJ Genomic Medicine December 2019
The cost of getting personal Nature editorial
Safeguarding Participants in Psychiatric Genetic Research: Perspectives of Key Stakeholder Groups. Rostami Maryam et al. Ethics & human research 2019 Nov 41(6) 12-22 Similar articles in PubMed
Should doctors have a legal duty to warn relatives of their genetic risks? Middleton Anna et al. Lancet (London, England) 2019 Nov Similar articles in PubMed
Sexual Health in the Era of Cancer Genetic Testing: Never the Twain Shall Meet? Bober Sharon L et al. The journal of sexual medicine 2019 Dec 16(12) 1867-1870 Similar articles in PubMed
Safety of Germline Genome Editing for Genetically Related "Future" Children as Perceived by Parents. Ishii Tetsuya et al. The CRISPR journal 2019 Nov Similar articles in PubMed
Screening Human Embryos for Polygenic Traits Has Limited Utility. Karavani Ehud et al. Cell 2019 Nov 179(6) 1424-1435.e8 Similar articles in PubMed
Willingness of women to participate in obstetrical and pediatric research involving biobanks. Savich Renate D et al. Journal of community genetics 2019 Nov Similar articles in PubMed
Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data. Middleton Anna et al. European journal of human genetics : EJHG 2019 Nov Similar articles in PubMed
A Reporter Took DNA Tests in the U.S. and China. The Results Left Her Worried KA Ha, et al, Bloomberg, November 30, 2019
Designing Preclinical Studies in Germline Gene Editing: Scientific and Ethical Aspects. Nordgren Anders et al. Journal of bioethical inquiry 2019 Nov Similar articles in PubMed
Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs? Guerrini Christi J et al. BMC medical ethics 2019 Nov 20(1) 84 Similar articles in PubMed
Preferences for Return of Genetic Results among Participants in the Jackson and Framingham Heart Studies. Joffe Steven et al. Circulation. Genomic and precision medicine 2019 Nov Similar articles in PubMed
DNA Data Marketplace: An Analysis of the Ethical Concerns Regarding the Participation of the Individuals. Ahmed Eman et al. Frontiers in genetics 2019 101107 Similar articles in PubMed
The case for banning heritable genome editing. Botkin Jeffrey R et al. Genetics in medicine : official journal of the American College of Medical Genetics 2019 Nov Similar articles in PubMed
Time to start intervening in the human germline? A utilitarian perspective K Smith, Bioethics, November 2019
Envisioning Future Research and Clinical Practice with a Bioethics Lens: A Word for the Next Generation of Researchers (<i>All of Us</i> Research Program, Activism, and Policy Implications). Richardson-Heron Dara et al. Journal of health care for the poor and underserved 2019 30(4S) 36-42 Similar articles in PubMed
Prioritising African perspectives in psychiatric genomics research: Issues of translation and informed consent. Kamaara Eunice et al. Developing world bioethics 2019 Nov Similar articles in PubMed
Changing the Conversation about The Ethics of Genomics and Health Disparities Research with American Indian and Alaska Native Communities: A Report from the Field. Hull Sara Chandros et al. Journal of health care for the poor and underserved 2019 30(4S) 21-26 Similar articles in PubMed
Ethical Issues in Newborn Sequencing Research: The Case Study of BabySeq. Ross Lainie Friedman et al. Pediatrics 2019 Nov Similar articles in PubMed
Considering Equity in Assessing Familial Benefit From the Return of Genomic Research Results. Goldenberg Aaron J et al. Pediatrics 2019 Nov Similar articles in PubMed
Evaluation of current regulation and guidelines of pharmacogenomic drug labels; opportunities for improvements. Shekhani Rawan et al. Clinical pharmacology and therapeutics 2019 Nov Similar articles in PubMed
Human germline editing needs one message Nature editorial, November 20, 2019
Issues and Ethical Considerations in Pharmaco-oncogenomics. Morgan Gilberto et al. Advances in experimental medicine and biology 2019 116891-101 Similar articles in PubMed
Does genetics matter for disease-related stigma? The impact of genetic attribution on stigma associated with rheumatic heart disease in the Western Cape, South Africa. Faure Marlyn C et al. Social science & medicine (1982) 2019 Dec 243112619 Similar articles in PubMed
The ethics approval process for multisite research studies in Australia: changes sought by the Australian Genomics initiative. Haas Matilda A et al. The Medical journal of Australia 2019 Nov 211(10) 440-444.e1 Similar articles in PubMed
Genome Sequencing in Newborns Raises Ethical Issues NY Times, November 2019
Ethical Issues in Newborn Sequencing Research: The Case Study of BabySeq LF Ross et al, Pediatrics, November 2019
CRISPR's unwanted anniversary J Doudna, Science, November 15, 2019
"I didn't have anything to decide, I wanted to help my kids"-An interview-based study of consent procedures for sampling human biological material for genetic research in rural Pakistan. Kongsholm Nana Cecilie Halmsted et al. AJOB empirical bioethics 9(3) 113-127 Similar articles in PubMed
Consent for newborn screening: screening professionals' and parents' views. Ulph F et al. Public health 2019 Nov 178151-158 Similar articles in PubMed
Personalized medicine in psychiatric disorders: prevention and bioethical questions. Quattrocchi A et al. La Clinica terapeutica 170(6) e421-e424 Similar articles in PubMed
Pharmacogenomic Testing In Pediatrics: Navigating The Ethical, Social, And Legal Challenges. Haga Susanne B et al. Pharmacogenomics and personalized medicine 2019 12273-285 Similar articles in PubMed
Heritable Genome Editing—Edited Eggs and Sperm to the Rescue? E Adashi et al, JAMA, November 13, 2019
The technical risks of human gene editing. Davies Benjamin et al. Human reproduction (Oxford, England) 2019 Nov Similar articles in PubMed
Current Policy Challenges in Genomic Medicine. Klein Roger D, et al. Clinical chemistry 2019 11 0. Similar articles in PubMed
Why using genetic risk scores on embryos is wrong E Birney blog, November 11, 2019
NIH Director Backs Moratorium for Heritable Genome Editing Gen News, November 8, 2019
Potential risks and solutions for sharing genome summary data from African populations. Tiffin Nicki, et al. BMC medical genomics 2019 11 0. (1) 152 Similar articles in PubMed
Disclosure of Genetic Results to At-risk Relatives without Consent: Issues for Health Care Professionals in Australia. McWhirter Rebekah et al. Journal of law and medicine 2019 Oct 27(1) 108-121 Similar articles in PubMed
The law of genetic privacy: applications, implications, and limitations. Clayton Ellen Wright et al. Journal of law and the biosciences 2019 Oct 6(1) 1-36 Similar articles in PubMed
A framework for tiered informed consent for health genomic research in Africa. Nembaware Victoria et al. Nature genetics 2019 Oct Similar articles in PubMed
Leaving some behind: the growing gap in precision medicine for minority populations. Perera Minoli et al. Expert review of precision medicine and drug development 2019 4(1) 3-5 Similar articles in PubMed
Parents weigh promise and risks of germline editing. Cohen Jon et al. Science (New York, N.Y.) 2019 Nov 366(6465) 564-565 Similar articles in PubMed
The genetics of human ageing. Melzer David, et al. Nature reviews. Genetics 2019 11 0. Similar articles in PubMed
Genethics and Human Reproduction: Religious Perspectives in the Academic Bioethics Literature. Padela Aasim I et al. The New bioethics : a multidisciplinary journal of biotechnology and the body 2019 Jun 25(2) 153-171 Similar articles in PubMed
Establishing a Multi-Country Sickle Cell Disease Registry in Africa: Ethical Considerations. Munung Nchangwi Syntia et al. Frontiers in genetics 2019 10943 Similar articles in PubMed
[Preimplantation genetic testing: legal and ethical aspects in clinical practice]. Simon Jeanne-Pascale et al. Revue medicale suisse 2019 Oct 15(668) 1909-1913