Where do members of the public turn to understand what genetic tests mean in terms of their own health? Now that genome-wide association studies and complete genome sequencing are widely available, the importance of education in personalized genomics cannot be overstated. Although some media have introduced the concept of genetic testing to better understand health and disease, the public's understanding of the scope and impact of genetic variation has not kept up with the pace of the science or technology. Unfortunately, the likely sources to which the public turn to for guidance - their physician and the media - are often no better prepared. We examine several venues for information, including print and online guides for both lay and health-oriented audiences, and summarize selected resources in multiple formats. We also note on the roadblocks to progress and discuss ways to remove them, as urgent action is needed to connect people with their genomes in a meaningful way.
机构:
Paracelsus Med Univ, Dept Resp Med Allergol & Sleep Med, Intens Care Med Unit, Nurnberg, Germany
Maastricht Univ, Maastricht Econ & Social Res Inst Innovat & Techn, UNU MERIT, Boschstr 24, NL-6211 AX Maastricht, NetherlandsParacelsus Med Univ, Dept Resp Med Allergol & Sleep Med, Intens Care Med Unit, Nurnberg, Germany
Evangelatos, Nikolaos
Satyamoorthy, Kapaettu
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机构:
Manipal Univ, Sch Life Sci, Manipal, Karnataka, IndiaParacelsus Med Univ, Dept Resp Med Allergol & Sleep Med, Intens Care Med Unit, Nurnberg, Germany
Satyamoorthy, Kapaettu
Brand, Angela
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机构:
Maastricht Univ, Maastricht Econ & Social Res Inst Innovat & Techn, UNU MERIT, Boschstr 24, NL-6211 AX Maastricht, Netherlands
Maastricht Univ, Dept Int Hlth, Publ Hlth Genom, Maastricht, Netherlands
Manipal Univ, Dr TMA Pai Endowed Chair Publ Hlth Genom, Manipal, Karnataka, IndiaParacelsus Med Univ, Dept Resp Med Allergol & Sleep Med, Intens Care Med Unit, Nurnberg, Germany
机构:
Fiocruz MS, Inst Oswaldo Cruz, GENETICA, ECLAMC,Latin Amer Collaborat Study Congenital Mal, BR-21045900 Rio De Janeiro, Brazil
CEMIC, ECLAMC, Buenos Aires, DF, ArgentinaFiocruz MS, Inst Oswaldo Cruz, GENETICA, ECLAMC,Latin Amer Collaborat Study Congenital Mal, BR-21045900 Rio De Janeiro, Brazil
Castilla, E. E.
Luquetti, D. V.
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机构:Fiocruz MS, Inst Oswaldo Cruz, GENETICA, ECLAMC,Latin Amer Collaborat Study Congenital Mal, BR-21045900 Rio De Janeiro, Brazil
机构:
Ctr Dis Control & Prevent, Natl Ctr Emerging & Zoonot Infect Dis, Atlanta, GA USACtr Dis Control & Prevent, Natl Ctr Emerging & Zoonot Infect Dis, Atlanta, GA USA
Armstrong, Gregory L.
MacCannell, Duncan R.
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机构:
Ctr Dis Control & Prevent, Natl Ctr Emerging & Zoonot Infect Dis, Atlanta, GA USACtr Dis Control & Prevent, Natl Ctr Emerging & Zoonot Infect Dis, Atlanta, GA USA
MacCannell, Duncan R.
Taylor, Jill
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机构:
New York State Dept Hlth, Wadsworth Ctr, Albany, NY 12237 USACtr Dis Control & Prevent, Natl Ctr Emerging & Zoonot Infect Dis, Atlanta, GA USA
Taylor, Jill
Carleton, Heather A.
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h-index: 0
机构:
Ctr Dis Control & Prevent, Natl Ctr Emerging & Zoonot Infect Dis, Atlanta, GA USACtr Dis Control & Prevent, Natl Ctr Emerging & Zoonot Infect Dis, Atlanta, GA USA
Carleton, Heather A.
Neuhaus, Elizabeth B.
论文数: 0引用数: 0
h-index: 0
机构:
Ctr Dis Control & Prevent, Natl Ctr Immunizat & Resp Dis, Atlanta, GA USACtr Dis Control & Prevent, Natl Ctr Emerging & Zoonot Infect Dis, Atlanta, GA USA
Neuhaus, Elizabeth B.
Bradbury, Richard S.
论文数: 0引用数: 0
h-index: 0
机构:
Ctr Dis Control & Prevent, Ctr Global Hlth, Atlanta, GA USACtr Dis Control & Prevent, Natl Ctr Emerging & Zoonot Infect Dis, Atlanta, GA USA
Bradbury, Richard S.
Posey, James E.
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机构:
Ctr Dis Control & Prevent, Natl Ctr HIV AIDS Viral Hepatitis STD & TB Preven, Atlanta, GA USACtr Dis Control & Prevent, Natl Ctr Emerging & Zoonot Infect Dis, Atlanta, GA USA
Posey, James E.
Gwinn, Marta
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机构:
CFOL Int, Atlanta, GA USACtr Dis Control & Prevent, Natl Ctr Emerging & Zoonot Infect Dis, Atlanta, GA USA
Gwinn, Marta
NEW ENGLAND JOURNAL OF MEDICINE,
2019,
381
(26):
: 2569
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2580
机构:
Stanford Univ, Sch Med, Dept Med, Palo Alto, CA 94304 USAStanford Univ, Sch Med, Dept Med, Palo Alto, CA 94304 USA
David, Sean P.
Johnson, Samuel G.
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机构:
Natl Acad, Roundtable Translating Genom Based Res Hlth, Inst Med IOM, Washington, DC USA
Kaiser Permanente Colorado, Appl Pharmacogen, Aurora, CO USA
Univ Colorado, Dept Clin Pharm, Denver, CO 80202 USAStanford Univ, Sch Med, Dept Med, Palo Alto, CA 94304 USA
Johnson, Samuel G.
Berger, Adam C.
论文数: 0引用数: 0
h-index: 0
机构:
Natl Acad, Roundtable Translating Genom Based Res Hlth, Inst Med IOM, Washington, DC USA
Kaiser Permanente Colorado, Appl Pharmacogen, Aurora, CO USAStanford Univ, Sch Med, Dept Med, Palo Alto, CA 94304 USA
Berger, Adam C.
Feero, W. Gregory
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h-index: 0
机构:
Kaiser Permanente Colorado, Appl Pharmacogen, Aurora, CO USA
Maine Dartmouth Family Med Residency Program, Augusta, ME USAStanford Univ, Sch Med, Dept Med, Palo Alto, CA 94304 USA
Feero, W. Gregory
Terry, Sharon F.
论文数: 0引用数: 0
h-index: 0
机构:
Natl Acad, Roundtable Translating Genom Based Res Hlth, Inst Med IOM, Washington, DC USA
Genet Alliance, Washington, DC USAStanford Univ, Sch Med, Dept Med, Palo Alto, CA 94304 USA
Terry, Sharon F.
Green, Larry A.
论文数: 0引用数: 0
h-index: 0
机构:
Univ Colorado, Dept Family Med, Denver, CO 80202 USAStanford Univ, Sch Med, Dept Med, Palo Alto, CA 94304 USA
Green, Larry A.
Phillips, Robert L., Jr.
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机构:
Amer Board Family Med, Lexington, KY USAStanford Univ, Sch Med, Dept Med, Palo Alto, CA 94304 USA
Phillips, Robert L., Jr.
Ginsburg, Geoffrey S.
论文数: 0引用数: 0
h-index: 0
机构:
Natl Acad, Roundtable Translating Genom Based Res Hlth, Inst Med IOM, Washington, DC USA
Duke Univ, Sch Med, Ctr Appl Genom & Precis Med, Durham, NC USAStanford Univ, Sch Med, Dept Med, Palo Alto, CA 94304 USA
机构:
Fdn Genom & Populat Hlth, Cambridge CB1 8RN, EnglandFdn Genom & Populat Hlth, Cambridge CB1 8RN, England
Zimmern, R. L.
Khoury, M. J.
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机构:
NCI, Div Canc Control & Populat Sci, Bethesda, MD 20892 USA
Ctr Dis Control & Prevent, Off Publ Hlth Genom, Atlanta, GA USAFdn Genom & Populat Hlth, Cambridge CB1 8RN, England