Public and biobank participant attitudes toward genetic research participation and data sharing.
Research assessing attitudes toward consent processes for high-throughput genomic-wide technologies and widespread sharing of data is limited. In order to develop a better understanding of stakeholder views toward these issues, this cross-sectional study assessed public and biorepository participant attitudes toward research participation and sharing of genetic research data. Forty-nine individuals participated in 6 focus groups; 28 in 3 public focus groups and 21 in 3 NUgene biorepository participant focus groups. In the public focus groups, 75% of participants were women, 75% had some college education or more, 46% were African-American and 29% were Hispanic. In the NUgene focus groups, 67% of participants were women, 95% had some college education or more, and the majority (76%) of participants was Caucasian. Five major themes were identified in the focus group data: (a) a wide spectrum of understanding of genetic research; (b) pros and cons of participation in genetic research; (c) influence of credibility and trust of the research institution; (d) concerns about sharing genetic research data and need for transparency in the Policy for Sharing of Data in National Institutes of Health-Supported or Conducted Genome-Wide Association Studies; (e) a need for more information and education about genetic research. In order to increase public understanding and address potential concerns about genetic research, future efforts should be aimed at involving the public in genetic research policy development and in identifying or developing appropriate educational strategies to meet the public's needs.
Lemke
A A
AA
Center for Genetic Medicine, Northwestern University, Chicago, Ill. 60611, USA. a-lemke@northwestern.edu
Wolf
W A
WA
Hebert-Beirne
J
J
Smith
M E
ME
D000328:Adult; D000368:Aged; D001294:Attitude to Health; D005260:Female; D036281:Genetic Research; D055106:Genome-Wide Association Study; D006801:Humans; D008297:Male; D008875:Middle Aged; D009316:National Institutes of Health (U.S.); D011639:Public Opinion; D014481:United States
Am J Med Genet A. 2009 Feb;149A(2):188-98
19161150
Sci Eng Ethics. 2004 Jul;10(3):457-77
15362702
Nat Genet. 2007 Oct;39(10):1181-6
17898773
Soc Sci Med. 2005 Jan;60(2):331-44
15522489
Public Health Genomics. 2009;12(4):203-15
19367089
Nature. 2007 Jun 7;447(7145):661-78
17554300
Community Genet. 2007;10(1):2-9
17167244
Eur J Hum Genet. 2008 Jun;16(6):664-5
18382478
Nat Rev Genet. 2007 Aug;8(8):633-9
17607307
Am J Hum Genet. 2002 Jun;70(6):1602
11992270
Hastings Cent Rep. 1996 Sep-Oct;26(5):25-9
8891706
Pharmacogenomics. 2005 Sep;6(6):639-46
16143003
Community Genet. 2007;10(3):147-58
17575459
Genet Med. 2008 Jan;10(1):46-53
18197056
Genet Med. 2008 Mar;10(3):193-200
18344709
PLoS Biol. 2008 Mar 25;6(3):e73
18366258
J Gen Intern Med. 1999 Sep;14(9):537-46
10491242