TY - JOUR
T1 - Knowing something versus feeling different
T2 - the effects and non-effects of genetic ancestry on racial identity
AU - Shim, Janet K.
AU - Rab Alam, Sonia
AU - Aouizerat, Bradley E.
N1 - Funding Information:
This research was supported by a grant from the National Institutes of Health, UCSF-Gladstone Institute for Virology and Immunology Center for AIDS Research, P30-AI027763.
Funding Information:
Our deepest thanks go to our participants, who gave generously of their time and perspectives, and whose spirit of exploration and discovery animated our study. We hope we have done justice to their experiences. Data in this manuscript were collected by the Women’s Interagency HIV Study (WIHS). The contents of this publication are solely the responsibility of the authors and do not represent the official views of the National Institutes of Health (NIH). WIHS (Principal Investigators): UAB-MS WIHS (Michael Saag, Mirjam-Colette Kempf, and Deborah Konkle-Parker), U01-AI-103401; Atlanta WIHS (Ighovwerha Ofotokun and Gina Wingood), U01-AI-103408; Bronx WIHS (Kathryn Anastos), U01-AI-035004; Brooklyn WIHS (Howard Minkoff and Deborah Gustafson), U01-AI-031834; Chicago WIHS (Mardge Cohen and Audrey French), U01-AI-034993; Metropolitan Washington WIHS (Mary Young and Seble Kassaye), U01-AI-034994; Miami WIHS (Margaret Fischl and Lisa Metsch), U01-AI-103397; UNC WIHS (Adaora Adimora), U01-AI-103390; Connie Wofsy Women’s HIV Study, Northern California (Ruth Greenblatt, Bradley Aouizerat, and Phyllis Tien), U01-AI-034989; WIHS Data Management and Analysis Center (Stephen Gange and Elizabeth Golub), U01-AI-042590; Southern California WIHS (Joel Milam), U01-HD-032632 (WIHS I – WIHS IV). The WIHS is funded primarily by the National Institute of Allergy and Infectious Diseases (NIAID), with additional co-funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Cancer Institute (NCI), the National Institute on Drug Abuse (NIDA), and the National Institute on Mental Health (NIMH). Targeted supplemental funding for specific projects is also provided by the National Institute of Dental and Craniofacial Research (NIDCR), the National Institute on Alcohol Abuse and Alcoholism (NIAAA), the National Institute on Deafness and other Communication Disorders (NIDCD), and the NIH Office of Research on Women’s Health. WIHS data collection is also supported by UL1-TR000004 (UCSF CTSA) and UL1-TR000454 (Atlanta CTSA).
Publisher Copyright:
© 2018 Informa UK Limited, trading as Taylor & Francis Group.
PY - 2018/1/2
Y1 - 2018/1/2
N2 - Since the completion of the Human Genome Project, there have been pitched debates about its implications and the research it enables. One prominent thread of concern focuses on the role of post-genomic science on technically enabling and generating interest in genetic ancestry testing (GAT). Critical analyses of GAT have pointed to multiple issues, raising the alarm on consumers’ experiences with such technologies. This paper describes the results of a pilot study in which we tracked women’s experiences receiving their genetic ancestry results, and their understandings of, reactions to, and valuing of this information over time. Overwhelmingly, our participants reported a curious combination of anticipation and satisfaction yet no discernable impact on their sense of self or racial identity. We elaborate on the effects and non-effects of GAT for the women in our study, and how we make sense of their simultaneous experiences of ‘knowing something’ but not ‘feeling different.’.
AB - Since the completion of the Human Genome Project, there have been pitched debates about its implications and the research it enables. One prominent thread of concern focuses on the role of post-genomic science on technically enabling and generating interest in genetic ancestry testing (GAT). Critical analyses of GAT have pointed to multiple issues, raising the alarm on consumers’ experiences with such technologies. This paper describes the results of a pilot study in which we tracked women’s experiences receiving their genetic ancestry results, and their understandings of, reactions to, and valuing of this information over time. Overwhelmingly, our participants reported a curious combination of anticipation and satisfaction yet no discernable impact on their sense of self or racial identity. We elaborate on the effects and non-effects of GAT for the women in our study, and how we make sense of their simultaneous experiences of ‘knowing something’ but not ‘feeling different.’.
KW - genetic ancestry
KW - racial identity
KW - return of results
UR - http://www.scopus.com/inward/record.url?scp=85041901715&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85041901715&partnerID=8YFLogxK
U2 - 10.1080/14636778.2018.1430560
DO - 10.1080/14636778.2018.1430560
M3 - Article
AN - SCOPUS:85041901715
SN - 1463-6778
VL - 37
SP - 44
EP - 66
JO - New Genetics and Society
JF - New Genetics and Society
IS - 1
ER -