Lizeth I Tamayo1, Hannah Lin1, Alauddin Ahmed2, Hasan Shahriar2, Rabiul Hasan2, Golam Sarwar2, Hem Mahbubul Eunus2, Habibul Ahsan1,3,4,5, Brandon L Pierce6,7,8. 1. Department of Public Health Sciences, The University of Chicago, Chicago, Illinois, USA. 2. University of Chicago Research Bangladesh, Dhaka, Bangladesh. 3. Department of Human Genetics, The University of Chicago, Chicago, Illinois, USA. 4. Comprehensive Cancer Center, The University of Chicago, Chicago, Illinois, USA. 5. Department of Medicine, The University of Chicago, Chicago, Illinois, USA. 6. Department of Public Health Sciences, The University of Chicago, Chicago, Illinois, USA, brandonpierce@uchicago.edu. 7. Department of Human Genetics, The University of Chicago, Chicago, Illinois, USA, brandonpierce@uchicago.edu. 8. Comprehensive Cancer Center, The University of Chicago, Chicago, Illinois, USA, brandonpierce@uchicago.edu.
Abstract
BACKGROUND: In human genetics research, it has become common practice for researchers to consider returning genetic information to participants who wish to receive it. Research participants in lower-resource settings may have barriers or competing interests that reduce the benefit or relevance of such information. Thus, the decision to return genetic information in these settings may involve special considerations of participants' interests and preferences. In this project, our goal was to assess Bangladeshi research participants' attitudes towards receiving information regarding genetic susceptibility to the effects of consuming arsenic-contaminated drinking water, a serious environmental health concern in Bangladesh and other countries. METHODS: We administered a short questionnaire to 200 individuals participating in the Health Effects of Arsenic Longitudinal Study. Associations between survey responses and participant characteristics were estimated using logistic regression. RESULTS: Overall, 100% of our participants were interested in receiving information regarding their genetic susceptibility to arsenic toxicities, and 91% indicated that being at increased genetic risk would motivate them to make efforts to reduce their exposure. Lower levels of education showed evidence of association with less concern regarding the health effects of arsenic and lower levels of motivation to reduce exposure in response to genetic information. CONCLUSIONS: Research participants in this low-resource setting appeared interested in receiving information on their genetic susceptibility to arsenic toxicity and motivated to reduce exposure in response to such information. Additional research is needed to understand how best to communicate genetic information in this population and to assess the impact of such information on individuals' behaviors and health.
BACKGROUND: In human genetics research, it has become common practice for researchers to consider returning genetic information to participants who wish to receive it. Research participants in lower-resource settings may have barriers or competing interests that reduce the benefit or relevance of such information. Thus, the decision to return genetic information in these settings may involve special considerations of participants' interests and preferences. In this project, our goal was to assess Bangladeshi research participants' attitudes towards receiving information regarding genetic susceptibility to the effects of consuming arsenic-contaminated drinking water, a serious environmental health concern in Bangladesh and other countries. METHODS: We administered a short questionnaire to 200 individuals participating in the Health Effects of Arsenic Longitudinal Study. Associations between survey responses and participant characteristics were estimated using logistic regression. RESULTS: Overall, 100% of our participants were interested in receiving information regarding their genetic susceptibility to arsenic toxicities, and 91% indicated that being at increased genetic risk would motivate them to make efforts to reduce their exposure. Lower levels of education showed evidence of association with less concern regarding the health effects of arsenic and lower levels of motivation to reduce exposure in response to genetic information. CONCLUSIONS: Research participants in this low-resource setting appeared interested in receiving information on their genetic susceptibility to arsenic toxicity and motivated to reduce exposure in response to such information. Additional research is needed to understand how best to communicate genetic information in this population and to assess the impact of such information on individuals' behaviors and health.
Authors: Rosemarie de la Rosa; Craig Steinmaus; Nicholas K Akers; Lucia Conde; Catterina Ferreccio; David Kalman; Kevin R Zhang; Christine F Skibola; Allan H Smith; Luoping Zhang; Martyn T Smith Journal: Environ Mol Mutagen Date: 2017-06-22 Impact factor: 3.216
Authors: Gail P Jarvik; Laura M Amendola; Jonathan S Berg; Kyle Brothers; Ellen W Clayton; Wendy Chung; Barbara J Evans; James P Evans; Stephanie M Fullerton; Carlos J Gallego; Nanibaa' A Garrison; Stacy W Gray; Ingrid A Holm; Iftikhar J Kullo; Lisa Soleymani Lehmann; Cathy McCarty; Cynthia A Prows; Heidi L Rehm; Richard R Sharp; Joseph Salama; Saskia Sanderson; Sara L Van Driest; Marc S Williams; Susan M Wolf; Wendy A Wolf; Wylie Burke Journal: Am J Hum Genet Date: 2014-05-08 Impact factor: 11.025
Authors: Brandon L Pierce; Muhammad G Kibriya; Lin Tong; Farzana Jasmine; Maria Argos; Shantanu Roy; Rachelle Paul-Brutus; Ronald Rahaman; Muhammad Rakibuz-Zaman; Faruque Parvez; Alauddin Ahmed; Iftekhar Quasem; Samar K Hore; Shafiul Alam; Tariqul Islam; Vesna Slavkovich; Mary V Gamble; Md Yunus; Mahfuzar Rahman; John A Baron; Joseph H Graziano; Habibul Ahsan Journal: PLoS Genet Date: 2012-02-23 Impact factor: 5.917
Authors: Brittany L Huhmann; Charles F Harvey; Ana Navas-Acien; Joseph Graziano; Faruque Parvez; Yu Chen; Maria Argos; Alauddin Ahmed; A K M Rabiul Hasan; Habibul Ahsan; Alexander van Geen Journal: Environ Int Date: 2019-01-31 Impact factor: 13.352
Authors: Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Mwenza Blell; Isabelle Budin-Ljøsne; Lorraine Cowley; Stephanie O M Dyke; Clara Gaff; Robert Green; Alison Hall; Amber L Johns; Bartha M Knoppers; Stephanie Mulrine; Christine Patch; Eva Winkler; Madeleine J Murtagh Journal: PLoS One Date: 2021-11-08 Impact factor: 3.240
Authors: Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Madeleine J Murtagh Journal: Per Med Date: 2021-04-06 Impact factor: 2.512