Participation in Genetic Research: Amazon's Mechanical Turk Workforce in the United States and India

Abstract

Background: Genomic research has innumerable benefits. However, if people are unwilling to participate in genomic research, application of knowledge will be limited. This study examined the likelihood of respondents from a high- and a low- to middle-income country to participate in genetic research. Methods: Cross-sectional data were collected using Amazon's Mechanical Turk workforce to ascertain attitudes toward participation in genetic research. Registered country of residence was either the US (n = 505) or India (n = 505). Multiple logistic regression models were used to assess adjusted effects of demographic characteristics, health, social status, beliefs and concerns on 4 genetic research outcomes. Results: Participants from India who believed chance and powerful others influenced their health were more likely to participate in genetic research (OR = 1.0, 95% CI 1.0-1.1) and to agree with sharing of DNA data (OR = 1.1, 95% CI 1.1-1.2). US participants were more likely to be concerned about protection of family history, which they indicated would affect participation (OR = 3.6, 95% CI 2.1-6.0). Commonalities for the likelihood of participation were beliefs that genetic research could help find new treatments (India OR = 2.3, 95% CI 1.0-5.4; US OR = 4.7, 95% CI 2.0-11.2) and descendants would benefit (India OR = 2.6, 95% CI 1.2-5.5; US OR = 3.0, 95% CI 1.3-7.1). Conclusions: Concurrence of beliefs on benefits and concerns about genetic research suggest they may be common across countries. Consideration of commonalities may be important to increase global participation in genetic research.

Attitudes Regarding Enrollment in a Genetic Research Project: An Informed Consent Simulation Study Comparing Views of People With Depression, Diabetes, and Neither Condition

“…Reasons for participation included the desire to help others, to help advance science, and to attain personal benefit. Depression studies and diabetes studies were seen as having similar benefits, with narrative comments spread almost uniformly across the goals of “finding a cure” and “helping society.” These findings are consistent with other published reports suggesting interest in learning about genetics and in enrolling as a volunteer in genetic research (Groth et al, 2016; Kerath et al, 2013; Michie, Henderson, Gerrett, & Corbie-Smith, 2011). The vast majority of our participants endorsed “privacy” as the safeguard of greatest importance, for instance, and emphasized the role that investigators might play in protecting individuals who participate in their research studies.…”

The willingness to participate in biomedical research involving human beings in low‐ and middle‐income countries: a systematic review

“…Additional reasons for participation mentioned were: ability to withdraw , advice from physician , community involvement , cultural acceptability , creating a feeling of community , low pressure decision , need for treatment , research involving a non‐invasive procedure , peer enrolment , low perception of risk , result availability , guarantee of confidentiality , being unaware of voluntariness of participation , research outcome, and finally seeing research participation as motivation to avoid risky behaviour .…”

“…Altruism was mentioned in 46 of 94 articles and thus the most often cited reason for study participation . It was ranked in the top three 30 times , and the top reason for participation 20 times . Altruism was ranked first in all regions, except for Eastern Europe, where it was ranked third, in both HIV and non‐HIV research, among non‐patient and patient participants, for hypothetical and real studies and for male participants.…”

“…Additional reasons for participation mentioned were: ability to withdraw [91], advice from physician [20,27,77,85], community involvement [34,[61][62][63]66], cultural acceptability [63,91], creating a feeling of community [44], low pressure decision [75], need for treatment [77], research involving a non-invasive procedure [46,81], peer enrolment [33,44,84], low perception of risk [54,70], result availability [20], guarantee of confidentiality [23,33,34,62], being unaware of voluntariness of participation [46], research outcome, [60,62,66,84] and finally seeing research participation as motivation to avoid risky behaviour [59]. The most important reasons for non-participation were safety concerns, inconvenience, stigmatisation, lack of social support, confidentiality concerns, physical pain, efficacy concerns and distrust.…”

High participation rate among 25 721 patients with broad age range in a hospital-based research project involving whole-genome sequencing – the Lausanne Institutional Biobank

“…Hospitals with a cohort linked to a biobank and a dedicated clinical research centre represent a unique opportunity to address these needs. Surveys in various countries indicate a relatively high interest in genetics from the population [12][13][14][15][16][17][18][19] and from patients suffering from selected diseases [20,21]. In addition, patients engaged in genetic research are generally interested in signing a broad general consent [16] and in being informed about incidental findings [22][23][24][25][26].…”