Direct to Consumer and Personal Genomics - September 2, 2015

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Personal Genomic Tests

Direct to Consumer and Personal Genomics - September 2, 2015

CDC Info

• The Ultimate Selfie
• CDC Podcast on Personal Genomic Tests
• Think Before You Spit: Do Personal Genomic Tests Improve Health?
• Think After You Spit: Personal Genomic Tests May Offer a Teachable Moment
• When Should We All Have Our Genomes Sequenced?
• Scientific Foundation for Personal Genomics- Recommendations from a NIH- CDC Workshop

Direct-to-consumer genetic testing: A systematic review of European guidelines, recommendations, and position statements.
Rafiq M et al. Genet Test Mol Biomarkers 2015 Aug 27.

Direct-to-consumer genetic testing: will it go away?
Dimond PF, Clinical Omics, August 2015

Defining "mutation" and "polymorphism" in the era of personal genomics.
Karki R et al. BMC Med Genomics 2015 37

Explaining, not just predicting, drives interest in personal genomics
Meisel SF et al. Genome Medicine, August 1, 2015

How well do customers of direct-to-consumer personal genomic testing services comprehend genetic test results? Findings from the Impact of Personal Genomics Study.
Ostergren JE et al. Public Health Genomics 2015 Jun 16.

New CDC blog post: The Ultimate Selfie, by Scott Bowen and Muin Khoury

Is the genomic translational pipeline being disrupted?
Williams MS et al. Hum. Genomics 2015 (1) 9

Informing the design of direct-to-consumer interactive personal genomics reports.
Shaer O et al. J. Med. Internet Res. 2015 (6) e146

Motivations, concerns and preferences of personal genome sequencing research participants: Baseline findings from the HealthSeq project.
Sanderson SC et al. Eur. J. Hum. Genet. 2015 Jun 3.

Consumer genomics is already here, by John Sterling, GEN Blog Post, Apr 28

The lifestylisation of healthcare? 'Consumer genomics' and mobile health as technologies for healthy lifestyle
Lucivero F et al. Applied & Translational Genomics, March 2015

Privacy concerns raised by use of consumer genomics data in pharmaceutical research, by Eric Topol, Genetic Literacy Project, January 2015

What is the current size of the consumer genomics market?  Crwys News, January 2015

The rise of the 'narciss-ome' by Carina Dennis. Nature News (2012)

Direct to Consumer Genetic Tests: Recent Developments - April 29, 2015

Consumer DNA firms get serious about drug development
Companies race to gather large data sets in bid to find treatments based on genetics. E. Check Hayden, Nature News, Apr 28

The shifting sands of direct-to-consumer genetic test regulation, by Philippa Brice, PHG Foundation, Feb 23

FDA permits marketing of first direct-to-consumer genetic carrier test for Bloom syndrome FDA Press Release, Feb 19

FDA. eases access to DNA tests of rare disorders  by Andrew Pollack, New York Times, Feb 19

FDA approves marketing of 23andMe?s carrier test for Bloom syndrome?and Bloom syndrome only. by Cecile Janssens, A. Cecile J.W. Janssens Blog, Feb 20

FDA eases access to DNA screening for inherited diseases  by Mathew Perone, Big Story, Feb 19

FDA clearance of DTC genetic test gets mixed reviews by Ricki Lewis, Medscape Medical News, Feb 20

US regulators try to tame 'wild west' of DNA testing
Experts, regulators mull how to foster technologies without posing undue risk to patients. Erika Check Hayden, Nature News, February 20, 2015

Association for Molecular Pathology Position Statement:
Direct Access Genetic Testing (Direct to Consumer Genetic Testing),  [PDF 119.84 KB] February 2015

NCI paper: Public awareness of direct-to-consumer genetic tests: Findings from the 2013 U.S. Health Information National Trends Survey.
Agurs-Col lins T et al. J Cancer Educ. 2015 Jan 20.

A new approach to assessing affect and the emotional implications of personal genomic testing for common disease risk.
O'Neill SC, et al. Public Health Genomics. 2015 Jan 21.

Design, methods, and participant characteristics of the Impact of Personal Genomics (PGen) Study, a prospective cohort study of direct-to-consumer personal genomic testing customers.
Carere DA, et al. Genome Med. 2014 Dec 3;6(12):96

Ethical considerations regarding classroom use of personal genomic information.
Parker LS, Grubs R. J Microbiol Biol Educ. 2014 Dec 15;15(2):191-6.

Personal genomes, participatory genomics and the anonymity-privacy conundrum.
Scaria V. J Genet. 2014 Dec;93(3):917-20

Direct to consumer genetic testing—is all knowledge power? By Margaret McCartney, BMJ 2015; 350,  26 January 2015

Who should have access to your DNA? By Eric Topol, the Medium, Jan 22

Personal Genomic Tests: Ongoing Issues - December 11, 2014

Personal genome service launches in UK.  
BMJ 2014;349:g7435

23andMe launches personal genome testing service in the UK, PHG Foundation, Dec 3

The hidden harm behind the return of results from personal genome services: a need for rigorous and responsible evaluation.
Janssens AC. Genet Med. 2014 Nov 20.

Personal utility in genomic testing: is there such a thing?
Bunnik EM, et al. J Med Ethics. 2014 May 28

Proposed regulatory framework for direct-to-consumer genetic testing: diagnostics vs genetic screening. 
Dorfman R, et al. Clin Chem. 2014 Nov;60(11):1455-6

New statement and guidance for consumers on direct-to-consumer genetic testing, Australia,Medical News Today, Dec 11

More on Personal Genomics: Consumer Empowerment & Oversight - October 22, 2014

What is direct-to-consumer genetic testing? From the NIH Genetics Home Reference

Empowering consumers through accurate genomic tests, Jeffrey Shuren, FDA Voice, Jun 26, 2014

Consumer information on DTC genetic tests, US Federal Trade Commission, Jan 7, 2014

CDC blog post: Think after you spit-personal genomics and the teachable moment (2012)

CDC paper: Scientific Foundation for Personal Genomics- recommendations from an NIH -CDC Workshop

Recent commentaries and insights

Changes on the horizon for consumer genomics in the EU
Louiza Kalokairinou et al. Science, October 17, 2014

Direct-to-consumer genetic testing: a case of potential harm, by Nancy Fliesler, Vector, May 5

Why genetic self-test kits should not be allowed into Canada, by Abby Lippman, Special to The Globe and Mail, Oct 16

Personal genomics in Greece: An overview of available direct-to-consumer genomic services and the relevant legal framework. 
Kechagia S, et al. Public Health Genomics 2014 Oct 1

Personal utility in genomic testing: is there such a thing? 
Bunnik EM, et al. J Med Ethics 2014 May

Gatekeepers or intermediaries? The  role of clinicians in commercial genomic testing. 
McGowan ML, et al. PLoS One. 2014 Sep 26;9(9):e108484

How a Wiki is keeping direct-to-consumer genetics alive, by Antonio Regalado, MIT Technology Review, Oct 19

Personal Genomics: Science, Oversight and Consumer Empowerment - July 2, 2014

Empowering consumers through accurate genomic tests, Jeffrey Shuren, FDA Voice, Jun 26

Consumer information on DTC genetic tests, US Federal Trade Commission, Jan 7

23andMe co-founder Anne Wojcicki's Washington charm offensive, by Ariana Eunjung Cha, Washington Post, Jun 27

Personal utility in genomic testing: is there such a thing? 
Bunnik EM, et al. J Med Ethics 2014 May

Personal utility and genomic information : look before you leap. 
Grosse et al. Genetics in Medicine (2009)

CDC blog post: Think after you spit-personal genomics and the teachable moment (2012)

Scientific Foundation for Personal Genomics- Recommendations from an NIH-CDC Workshop