Research Participants’ Attitudes towards Receiving Information on Genetic Susceptibility to Arsenic Toxicity in Rural Bangladesh

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 arseniccontaminated 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 inter-ested 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.

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

“…A large number of studies have assessed public views on return of SSR in the context of clinical research. Overall, interest in SSR is high [44,91,[121][122][123][124], ranging from 73-100% [13,49,53,54,[57][58][59]. Although some studies showed high support for receiving all types of results [121], the most support has been shown for results relating to an increased risk of an actionable, treatable, or preventable condition [59,91,125,126] but also for conditions that are do not currently have treatment options [53,91].…”

Role of Public Awareness Ensuring the Sustainability of Arsenic Mitigation

“…A questionnaire based survey for the assessment of attitudes towards receiving information regarding genetic susceptibility to the effects of arsenic in drinking water was conducted recently. The vast majority of the participants in the rural, low resource setting were interested in receiving information on their genetic susceptibility to the effects of arsenic exposure and being motivated to reduce their exposure if they learned they were at elevated genetic risk for arsenic toxicities [52]. Another questionnaire based study revealed the differences of attitude of the patient and nonpatient respondents between pre and post participation in arsenic mitigation programs were positively significant.…”