Communicating genetic and genomic information: health literacy and numeracy considerations.
Genomic research is transforming our understanding of the role of genes in health and disease. These advances, and their application to common diseases that affect large segments of the general population, suggest that researchers and practitioners in public health genomics will increasingly be called upon to translate genomic information to individuals with varying levels of health literacy and numeracy. This paper discusses the current state of research regarding public understanding of genetics and genomics, the influence of health literacy and numeracy on genetic communication, and behavioral responses to genetic and genomic information. The existing research suggests that members of the general public have some familiarity with genetic and genomic terms but have gaps in understanding of underlying concepts. Findings from the limited research base to date indicate that health literacy affects understanding of print and oral communications about genetic and genomic information. Numeracy is also likely to be an important predictor of being able to understand and apply this information, although little research has been conducted in this area to date. In addition, although some research has examined behavior change in response to the receipt of information about genetic risk for familial disorders and genomic susceptibility to common, complex diseases, the effects of health literacy and numeracy on these responses have not been examined. Potential areas in which additional research is needed are identified and practical suggestions for presenting numeric risk information are outlined. Public health genomics researchers and practitioners are uniquely positioned to engage in research that explores how different audiences react to and use genomic risk information.
Lea
D H
DH
National Human Genome Research Institute, NIH, Bethesda, MD 20892-2070, USA. lead@mail.nih.gov
Kaphingst
K A
KA
Bowen
D
D
Lipkus
I
I
Hadley
D W
DW
D023281:Genomics; D057220:Health Literacy; D006801:Humans; D011634:Public Health
Med Decis Making. 2007 Sep-Oct;27(5):696-713
17873259
J Clin Oncol. 2008 Feb 20;26(6):948-54
18281669
Am J Prev Med. 2007 Dec;33(6 Suppl):S398-405
18021915
Cancer Epidemiol Biomarkers Prev. 2002 Jun;11(6):521-8
12050092
Public Health Genomics. 2009;12(2):84-91
19039252
Ann Fam Med. 2004 Nov-Dec;2(6):583-94
15576545
Genet Med. 2008 Jan;10(1):19-32
18197053
J Genet Couns. 2004 Aug;13(4):305-20
19736696
Health Educ Behav. 2009 Dec;36(6):1065-81
19834054
Am J Med Genet A. 2003 Apr 30;118A(3):201-9
12673648
Am J Med Genet A. 2008 Jan 15;146A(2):174-81
18076116
Med Care Res Rev. 2007 Aug;64(4):379-94
17684108
JAMA. 2008 Mar 19;299(11):1335-44
18349094
Semin Nephrol. 2010 Mar;30(2):203-14
20347649
Med Decis Making. 2004 May-Jun;24(3):265-71
15155015
J Clin Oncol. 2003 Nov 1;21(21):4034-41
14581427
Eur J Cancer Prev. 2005 Feb;14(1):69-75
15677898
Med Decis Making. 2009 Mar-Apr;29(2):193-201
19279297
Soc Sci Med. 2003 Mar;56(5):1099-109
12593881
Fam Med. 1993 Jun;25(6):391-5
8349060
BMJ. 2001 Apr 28;322(7293):1056-9
11325776
J Clin Oncol. 2004 Jan 1;22(1):39-44
14701766
Nicotine Tob Res. 2005 Dec;7(6):881-9
16298723
J Genet Couns. 1999 Feb;8(1):17-36
11657177
Ann Behav Med. 2007 Feb;33(1):22-8
17291167
J Am Med Inform Assoc. 2007 Nov-Dec;14(6):713-21
17712082
J Health Commun. 2005 Jun;10(4):323-9
16036739
Cancer. 2005 Jul 15;104(2):273-81
15948171
J Genet Couns. 1998 Feb;7(1):15-29
26141094
Am J Health Behav. 2007 Sep-Oct;31 Suppl 1:S47-56
17931136
Am J Med Sci. 2004 Aug;328(2):88-93
15311167
Cancer Epidemiol Biomarkers Prev. 2007 Feb;16(2):249-55
17267389
Health Aff (Millwood). 2007 May-Jun;26(3):741-8
17485752
Prev Med. 2000 Jul;31(1):75-80
10896846
Lit Med. 2007 Spring;26(1):240-68
18290369
Behav Med. 2005 Fall;31(3):93-105
16252621
J Genet Couns. 1995 Jun;4(2):83-95
24234307
Behav Med. 2001 Spring;27(1):37-47
11575171
J Clin Oncol. 2002 Mar 1;20(5):1260-8
11870168
Genet Med. 2007 Aug;9(8):496-503
17700387
J Natl Cancer Inst Monogr. 1999;(25):15-20
10854451
Cancer Control. 2004 Jul-Aug;11(4):245-53
15284716
Am J Med Genet A. 2004 Jul 30;128A(3):285-93
15216550
Am J Med Genet A. 2003 Jun 1;119A(2):156-61
12749055
Health Psychol. 2004 Mar;23(2):178-88
15008663
Ann Behav Med. 2007 Nov-Dec;34(3):275-86
18020937
Am J Hum Genet. 1998 Apr;62(4):979-84
9529342
Prev Med. 2006 Feb;42(2):102-8
16325899
Genet Test. 2004 Spring;8(1):1-12
15140369
Nat Genet. 2008 Aug;40(8):939-42
18665132
Soc Sci Med. 2007 Oct;65(7):1442-57
17614177
Addict Behav. 1997 Nov-Dec;22(6):741-51
9426791
Am J Prev Med. 2005 Nov;29(4):375-6
16242604
Am J Public Health. 2007 Apr;97(4):620-5
17329649
Cancer Epidemiol Biomarkers Prev. 2002 Oct;11(10 Pt 1):1115-8
12376518
Health Educ Behav. 2005 Oct;32(5):686-701
16148214
Genet Med. 2008 Apr;10(4):251-8
18414207
N Engl J Med. 2008 Jan 10;358(2):105-7
18184955