Bioethics, Genetic Counseling and Policy

NIH to expand critical catalog for genomics research NIH | 2 February 2017
Utilization of genetic tests: analysis of gene-specific billing in Medicare claims data Genetics in Medicine | 26 January 2017
Genetic testing in ALS: A survey of current practices Neurology | 3 February 2017
Approaching confidentiality at a familial level in genomic medicine: a focus group study with healthcare professionals. BMJ | 3 February 2017
Genetic Testing and Counseling Among Patients With Newly Diagnosed Breast Cancer JAMA | 7 February 2017
The need for a next-generation public health response to rare diseases. CDC Genomics and Health Impact Blog | 8 February 2017
Everyone Might Be A Loser In The Gene Editing Patent Fight Buzzfeed | 14 February 2017
The Privacy Delusions Of Genetic Testing Forbes | 15 February 2017
Genomics in routine clinical care: what does this mean for primary care?British Journal of General Practice | 26 January 2017
Whole genome sequencing in children: ethics, choice and deliberation Journal of Medical Ethics | 27 January 2017
Which Results to Return: Subjective Judgments in Selecting Medically Actionable Genes Genetic Testing and Molecular Biomarkers | 1 February 2017
Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US. AJHG | 9 February 2017
Surgeons Essential for Genetic Counseling in Breast Cancer, Expert Says Targeted Oncology | March 10
Employee Wellness Bill Could Stifle Genetics Research in Age of Big-Data Studies GenomeWeb | March 14
A new bill would allow employers to see your genetic information — unless you pay a fine Vox | March 13
Opposition grows to ‘workplace wellness’ bill that would scale back genetic privacy STAT | March 13
Don’t Discriminate Against Mutants Like Me The New York Times | March 23
The Loopholes in the Law Prohibiting Genetic Discrimination The Atlantic | March 13
GINA Supporters Concerned House Bill Undermines Genetic Non-Discrimination Law GenomeWeb | March 10
R. 1313 “Preserving Employee Wellness Programs Act” Congress Bill
ASHG Opposes H.R.1313, the Preserving Employee Wellness Programs Act Bill Would Undermine Genetic Privacy Protections ASHG | March 8
The Common Rule, UpdatedNEJM | Feb 22
23andMe, Big Data, and the Genetics of Depression JAMA | January 3, 2017
Conflicts of interest in genetic counseling: acknowledging and accepting Genetics in Medicine 26 January 2017
Genome editing in clinical genetics: points to consider—a statement of the American College of Medical Genetics and Genomics Genetics in Medicine | 26 January 2017
The Role of Genetic Counseling in Reproductive Healthcare – Nov 17 - Illumina
House approves the 21st Century Cures Act, sending landmark bill to Senate – Nov 30 - STAT
Genetic Counseling Prerequisite Reduced Appropriate Testing, Study Finds – Nov 4 – AJMC.com
A Trump Bioethics Commission? – Nov 10 – The Huffington Post
Good Start Genetics Selling Carrier Screening Tests Through Amazon – Nov 2 -GenomeWeb
Springer, BMC retracting nearly 60 papers for fake reviews and other issues – Nov 1 –Retract Watch
Pioneering Geneticist Explains Ambitious Plan to “Write” the Human Genome – Oct. 26 – The JAMA Network
Traditional and Novel Methods of Genetic/Genome Counseling – Oct. 21 - ASHG 2016
Mayo Clinic Genetic Counselors Publish Book, Practical Genetic Counseling for the Laboratory – Oct. 20-MML Blog
Many DTC Genetic Testing Firms Fail to Disclose Info on Privacy, Confidentiality, Research Use – Sep 23-Genome Web
Breaking Taboo, Swedish Scientist Seeks To Edit DNA Of Healthy Human Embryos – Sep 22 –NPR/MPR
Policy Changes Needed to Prevent Disparities in Genetically Based Medicine – GenomeWeb- Aug 9
Employees as Research Participants: Ethical and Policy Issues – July 26 – The Hastings Center
FDA Issues Draft Guidance as Part of Precision Medicine Initiative – July 28 – The National Law Review
FDA Drafts Docs on Next-Gen Sequencing for Precision Medicine – Jul 19 –healthITAnanlytics.com
Future of Liquid Biopsy Weighed By Dx Stakeholders at FDA Workshop – Jul 21 -GenomeWeb
At Gene Editing Meeting, Scientists Discuss God, Racism, Designer Babies – Jul 14 - BussFeed
Congressional Committee Proposes 4 Percent Boost to NIH Budget in Fiscal 2017 – July 7- GenomeWeb
Predictive Genetic Testing for Neurodegenerative Conditions: How Should Conflicting Interests Within Families be Managed? – June 8 - Journal of Medical Ethics
Effect of Public Deliberation on Attitudes toward Return of Secondary Results in Genomic Sequencing – Jun 16 - Journal of Genetic Counseling
Blazing paths in genetic counseling – June 22 - Science
How Science Can Change Your Genes – June 23 - TIME
Precision Medicine's Post-Racial Promise - Genetic and social data could allow physicians to make more exact diagnoses. But can they eliminate racial disparities in health? – Jun 8 – The Atlantic
Genetic counseling: A growing area of opportunity – Jun 13 - Science
UVM Medical Center blazes genetic mapping trail – Jun 7 – Burlington Free Press
Anti-Discrimination Law Clarifications Benefit Employers, May Confuse Public, Say Critics – May 25 - GenomeWeb
Plan to synthesize human genome triggers a mixed response – June 2 - Nature
Anti-Discrimination Law Clarifications Benefit Employers, May Confuse Public, Say Critics – May 25 - GenomeWeb
After a prominent gene-testing firm declined to give patients their complete data, ACLU filed a legal complaint - May 19 - Science
Gene variants linked to success at school prove divisive – May 11 - Nature
What to expect from genetic counseling – May 9 – philly.com/Health
Pondering ‘what it means to be human’ on the frontier of gene editing - May 3 – Washington Post
The Promise and Peril of the Genomic Revolution – Podcast – Apr 29 – StarTalk Radio Show
Why genetic counseling is more popular than ever – Apr 18 - PBS
CEO of controversial firm claims she has successfully carried out first anti-ageing treatment - on herself – Apr 26 – DailyMail.com
Blue Ribbon Panel Announced to Help Guide Vice President Biden’s National Cancer Moonshot Initiative – Apr 4 - NIH
Dishman leaves Intel for Precision Medicine Initiative – Apr 14 – Clinical Innovation+Technology
BRCA 1/2-negative patients who receive counseling after genetic testing have lower anxiety – Apr 7 – Wiley Online
Senate HELP Committee Marks Up Precision Medicine, Other “Cures” Bills – Apr 7 – National Law Review
Genetic Testing Key for Early Autism Diagnosis, Treatment, Says Expert – Mar 31 - UtahBusiness
Ethical Conclusions of DNA editing – Washington, DC Daily News – Mar 31 – Daily Star Gazette
Genetic Counselors Can Weed Out Errors, Ensure Patients Get Needed Tests, Larsen Haidle Says – Mar 2 - AJMC
Johns Hopkins Bioethicist Will Chair Board Overseeing Historic Million-Person NIH Research Study – Mar 3 - Johns Hopkins Press Release
Was it worth it? Patients’ perspectives on the perceived value of genomic-based individualized medicine – Feb 9 – Journal of Community Genetics, Full Text Attached
NIH peer review percentile scores are poorly predictive of grant productivity – Feb 16 – eLife
Utilizing Remote Real-Time Videoconferencing to Expand Access to Cancer Genetic Services in Community Practices: A Multicenter Feasibility Study – Feb 1 – J. Med Internet Res
Finding an ethical path forward for mitochondrial replacement – Feb 3 - Science
Utilizing Remote Real-Time Videoconferencing to Expand Access to Cancer Genetic Services in Community Practices: A Multicenter Feasibility Study. – Feb 3 – Pub Med
Response to Call for Essays: Could DTC Genome Testing Exacerbate Research Inequities? – Jan 20 – Bioethics Forum, The Hastings Center
Senate to Take Piecemeal Approach to 21st Century Cures Act- Jan 20 - GenomeWeb
Embryo Editing Application Considered – GenomeWeb – Jan 14
Q&A: FDA's Gutierrez, Mansfield Discuss Regulatory Efforts in 2015; Set 2016 Expectations – GenomeWeb – Jan 13
Illumina Files Two Lawsuits in Europe Claiming NIPT Patent Infringement – GenomeWeb – Jan 7
Bioethics as a Governance Practice – SpringerLink – Jan 7

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Bioethics, Genetic Counseling and Policy