Ethnic disparities in the perception of ethical risks from psychiatric genetic studies

E. A. Nwulia, M. M. Hipolito, S. Aamir, W. B. Lawson, John Nurnberger

Research output: Contribution to journalArticle

12 Citations (Scopus)

Abstract

To examine if ethnic differences in concerns about unfavorable consequences from psychiatric genetic studies, existing between non-Hispanic Black and White populations, persist among participants in an actual genetic study of bipolar disorder. Historically, minority subjects have been less willing to participate in such studies. Participants in the US Bipolar Genome Study (BIGS) were assessed on six items of concerns in the Questionnaire on Genetic Risk (QGR). Each item had five response categories, ranging from "not at all" concerned to "very concerned." Responses from Black (N=188) and White participants (N=1,065) formed the base for this analysis. Concerns about unfavorable consequences of conducting psychiatric genetic studies were prevalent in the whole sample. Concern for medical insurance was most prevalent (63.4%), followed by job concern (58.8%) and stigma (57.4%). Racial discrimination was less prevalent (28.1%). Blacks endorsed significantly stronger concerns for all consequences except the medical insurance item (P<0.008). The most significant ethnic disparity in concerns was for racial discrimination (P<0.0001). Associations between levels of concern and ethnicity remained significant after adjustments for other factors in multivariate models. Ethnic differences (Blacks vs. Whites) in perceived concerns about unfavorable consequences from participation persist among participants in an actual psychiatric genetic study. This suggests that other factors may play a more critical role in the decision not to participate. Future studies should investigate more comprehensive sources of barriers to consenting for ongoing psychiatric genetic studies in representative samples, incorporating assessments from non-participants as well as participants.

Original languageEnglish
Pages (from-to)569-580
Number of pages12
JournalAmerican Journal of Medical Genetics, Part B: Neuropsychiatric Genetics
Volume156
Issue number5
DOIs
StatePublished - Jul 2011

Fingerprint

Psychiatry
Racism
Insurance
Bipolar Disorder
Genome
Population
hydroquinone

Keywords

  • Concerns
  • Disparity
  • Ethnicity
  • Genetics
  • Psychiatric

ASJC Scopus subject areas

  • Genetics(clinical)
  • Psychiatry and Mental health
  • Cellular and Molecular Neuroscience

Cite this

Ethnic disparities in the perception of ethical risks from psychiatric genetic studies. / Nwulia, E. A.; Hipolito, M. M.; Aamir, S.; Lawson, W. B.; Nurnberger, John.

In: American Journal of Medical Genetics, Part B: Neuropsychiatric Genetics, Vol. 156, No. 5, 07.2011, p. 569-580.

Research output: Contribution to journalArticle

@article{b3fa58d026714f52a11197eabe29f7f1,
title = "Ethnic disparities in the perception of ethical risks from psychiatric genetic studies",
abstract = "To examine if ethnic differences in concerns about unfavorable consequences from psychiatric genetic studies, existing between non-Hispanic Black and White populations, persist among participants in an actual genetic study of bipolar disorder. Historically, minority subjects have been less willing to participate in such studies. Participants in the US Bipolar Genome Study (BIGS) were assessed on six items of concerns in the Questionnaire on Genetic Risk (QGR). Each item had five response categories, ranging from {"}not at all{"} concerned to {"}very concerned.{"} Responses from Black (N=188) and White participants (N=1,065) formed the base for this analysis. Concerns about unfavorable consequences of conducting psychiatric genetic studies were prevalent in the whole sample. Concern for medical insurance was most prevalent (63.4{\%}), followed by job concern (58.8{\%}) and stigma (57.4{\%}). Racial discrimination was less prevalent (28.1{\%}). Blacks endorsed significantly stronger concerns for all consequences except the medical insurance item (P<0.008). The most significant ethnic disparity in concerns was for racial discrimination (P<0.0001). Associations between levels of concern and ethnicity remained significant after adjustments for other factors in multivariate models. Ethnic differences (Blacks vs. Whites) in perceived concerns about unfavorable consequences from participation persist among participants in an actual psychiatric genetic study. This suggests that other factors may play a more critical role in the decision not to participate. Future studies should investigate more comprehensive sources of barriers to consenting for ongoing psychiatric genetic studies in representative samples, incorporating assessments from non-participants as well as participants.",
keywords = "Concerns, Disparity, Ethnicity, Genetics, Psychiatric",
author = "Nwulia, {E. A.} and Hipolito, {M. M.} and S. Aamir and Lawson, {W. B.} and John Nurnberger",
year = "2011",
month = "7",
doi = "10.1002/ajmg.b.31198",
language = "English",
volume = "156",
pages = "569--580",
journal = "American Journal of Medical Genetics, Part B: Neuropsychiatric Genetics",
issn = "1552-4841",
publisher = "Wiley-Liss Inc.",
number = "5",

}

TY - JOUR

T1 - Ethnic disparities in the perception of ethical risks from psychiatric genetic studies

AU - Nwulia, E. A.

AU - Hipolito, M. M.

AU - Aamir, S.

AU - Lawson, W. B.

AU - Nurnberger, John

PY - 2011/7

Y1 - 2011/7

N2 - To examine if ethnic differences in concerns about unfavorable consequences from psychiatric genetic studies, existing between non-Hispanic Black and White populations, persist among participants in an actual genetic study of bipolar disorder. Historically, minority subjects have been less willing to participate in such studies. Participants in the US Bipolar Genome Study (BIGS) were assessed on six items of concerns in the Questionnaire on Genetic Risk (QGR). Each item had five response categories, ranging from "not at all" concerned to "very concerned." Responses from Black (N=188) and White participants (N=1,065) formed the base for this analysis. Concerns about unfavorable consequences of conducting psychiatric genetic studies were prevalent in the whole sample. Concern for medical insurance was most prevalent (63.4%), followed by job concern (58.8%) and stigma (57.4%). Racial discrimination was less prevalent (28.1%). Blacks endorsed significantly stronger concerns for all consequences except the medical insurance item (P<0.008). The most significant ethnic disparity in concerns was for racial discrimination (P<0.0001). Associations between levels of concern and ethnicity remained significant after adjustments for other factors in multivariate models. Ethnic differences (Blacks vs. Whites) in perceived concerns about unfavorable consequences from participation persist among participants in an actual psychiatric genetic study. This suggests that other factors may play a more critical role in the decision not to participate. Future studies should investigate more comprehensive sources of barriers to consenting for ongoing psychiatric genetic studies in representative samples, incorporating assessments from non-participants as well as participants.

AB - To examine if ethnic differences in concerns about unfavorable consequences from psychiatric genetic studies, existing between non-Hispanic Black and White populations, persist among participants in an actual genetic study of bipolar disorder. Historically, minority subjects have been less willing to participate in such studies. Participants in the US Bipolar Genome Study (BIGS) were assessed on six items of concerns in the Questionnaire on Genetic Risk (QGR). Each item had five response categories, ranging from "not at all" concerned to "very concerned." Responses from Black (N=188) and White participants (N=1,065) formed the base for this analysis. Concerns about unfavorable consequences of conducting psychiatric genetic studies were prevalent in the whole sample. Concern for medical insurance was most prevalent (63.4%), followed by job concern (58.8%) and stigma (57.4%). Racial discrimination was less prevalent (28.1%). Blacks endorsed significantly stronger concerns for all consequences except the medical insurance item (P<0.008). The most significant ethnic disparity in concerns was for racial discrimination (P<0.0001). Associations between levels of concern and ethnicity remained significant after adjustments for other factors in multivariate models. Ethnic differences (Blacks vs. Whites) in perceived concerns about unfavorable consequences from participation persist among participants in an actual psychiatric genetic study. This suggests that other factors may play a more critical role in the decision not to participate. Future studies should investigate more comprehensive sources of barriers to consenting for ongoing psychiatric genetic studies in representative samples, incorporating assessments from non-participants as well as participants.

KW - Concerns

KW - Disparity

KW - Ethnicity

KW - Genetics

KW - Psychiatric

UR - http://www.scopus.com/inward/record.url?scp=79958748639&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=79958748639&partnerID=8YFLogxK

U2 - 10.1002/ajmg.b.31198

DO - 10.1002/ajmg.b.31198

M3 - Article

C2 - 21595007

AN - SCOPUS:79958748639

VL - 156

SP - 569

EP - 580

JO - American Journal of Medical Genetics, Part B: Neuropsychiatric Genetics

JF - American Journal of Medical Genetics, Part B: Neuropsychiatric Genetics

SN - 1552-4841

IS - 5

ER -