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INTRODUCTION
Genetic testing is becoming more accessible and widely used everywhere, and researchers are now more interested than before in evaluating community awareness and attitudes about genetics in the public. These studies are often designed to give a better understanding of what factors influence public perspectives on testing and people’s reactions to new medical technologies based on genomics (e.g., Bates, 2005; Molster et al., 2009; Bםrף et al., 2020; Wang et al., 2021). Studies of attitudes about genetic testing from a public health perspective often aim to understand whether (and under what conditions) receiving information about genes could influence people’s health-related behaviors (e.g., Dar-Nimrod et al., 2018; Eum et al., 2018; Peterson et al., 2018; Alvord et al., 2020). Other studies aim to inform the public about privacy regarding healthcare procedures and to assess public opinion on potential outcomes of commercializing technology-based healthcare products (e.g., Horn et al., 2011; Gibbon, 2016; Raz et al., 2020; Gerdes et al., 2021).
Recent literature reviews on knowledge and trust in genetics highlighted that people everywhere generally have positive attitudes about genetic testing that persist even if knowledge about genetics is self-described as low. However, public attitudes could vary according to the technologies and purposes for which genetic knowledge is applied (Condit, 2001, 2010; Etchegary et al., 2009; Chapman et al., 2019; ASHG, 2020; Calabrò et al., 2020). Earlier research on public attitudes about genetics was conducted with the assumption that attitudes would be stable and unequivocal rather than context-dependent and biased (Condit, 2010). However, more recent crosssectional studies have uncovered differences in public knowledge and attitudes across multi-year periods (e.g., Henneman et al., 2013). Thus, local sociocultural characteristics and local history could shape individual attitudes over time. Context and local history would have a lasting influence in people’s trust in genetics (Cunningham-Burley, 2006; Jonassaint et al., 2010; Canedo et al., 2019). Researchers have employed various sampling techniques to study public knowledge about genetics and public views on genetic testing, such as convenience sampling (Etchegary et al., 2013; Arafah et al., 2021) and randomized studies (Jallinjoa and Aro, 2000; Haga et al., 2013;LePoire et al., 2019; Wang et al., 2021). Likewise, researchers have employed data collection instruments, such as telephone interviews (Molster et al., 2009), postal surveys (Etchegary et al., 2009), online surveys (Dye et al., 2016; Arafah et al., 2021), focus groups (Bates, 2005; Schumann et al., 2021), Likertscale questionnaires administered during in-person interviews (Chokoshvili et al., 2017; Kvaratskhelia et al., 2021), or self-administered surveys with fixed-choice and open-ended items (Jonassaint et al., 2010). Like elsewhere, genetic testing integrated into healthrelated strategies is increasingly available in Argentina (e.g., Penchaszadeh, 2009, 2013; Vishnopolska et al., 2018). Academic researchers have conducted genetic testing for various ancestry inferences since the 1990s (e.g., Martםnez Marignac et al.,1999; García and Demarchi, 2006; Corach et al., 2009; Carnese et al., 2011; Avena et al., 2012, 2013). However, genetic ancestry testing to explore individual identities has been far less common ( García et al., 2016; Spina et al., 2016; Di Fabio Rocca et al., 2018, 2020). Therefore, local results of scholarly research on genetic ancestry inference were not widely known by the public when we carried out fieldwork for our project. Our overall project investigated how recent trends in genetic ancestry research in Argentina interacted with the participants’ perspectives of national belonging. The study employed a multi-method research design through the generation, analysis, and interpretation of genomic and ethnographic data in a mid-size city in the province of Buenos Aires, Argentina. Over that period, our research team conducted genetic ancestry analyses, ethnographic interviews, and participant observation (Mendoza and Cabana, 2019; Cabana et al., 2022; Mendoza et al., 2022).
This work aims to explore the participants’ views and self-assessed levels of knowledge and trust in genetics based on their responses to an in-person survey of adults who consented to participate in our project. The results of our analysis help to begin unraveling public attitudes and trust in genetics among urban populations of Argentina. Additionally, our study provides a preliminary baseline of data to conduct further research on individual’s level of knowledge and level of public trust in genetics among other local populations, since this topic remains poorly studied in the country.
MATERIALS AND METHODS
Research site, population sample, and survey
Our research was carried out in two historic neighborhoods, locally known as El Centro and Santa Elena, in Luján (population: 78,346 inhabitants in 2010), a city with a long colonial history in the province of Buenos Aires, Argentina, now included in the megacity of Buenos Aires (Buzai and Montes Galbán, 2020; Buzai et al., 2021).
The national decennial census divided the city into 87 census tracks. El Centro included 20 census tracks and Santa Elena included three census tracks. We operationalized the number of randomly selected households in those two historic neighborhoods using 2010 census tracks described by Buzai (2014) as social maps of the city. The minimum number of households per track in El Centro was 142 and the maximum in Santa Elena was 419 (the average number of households per track in the targeted neighborhoods was 274, according to Principi (2021, pers. comm.). The two neighborhoods were characterized by socioeconomic levels varying from very high and high to medium (Principi and Buzai, 2020). We attempted to recruit one resident per household by leaving recruitment letters at 300 randomly selected households, followed by a personal visit by a research team member. Moreover, the research team made three consecutive attempts to contact a household resident at different times of the day before moving to a different address. We also advertised our project in the local newspaper (Papaleo, 2015), on social media, and in public places, posting large-size announcements in the City Hall, the Public Library, and the local University.
Despite our efforts to engage with residents, many of them did not respond or were reluctant to participate in our project-which included face-to-face contact with team members. Those who declined to engage expressed feelings of lack of security at home, fear of letting anybody in, and overall concern about rising crime levels in the community. For those interested in participating, we offered to meet in public places, but most opted for completing our in-person survey and saliva collection in their homes. A handful of recruitments took place at the local university. Our field team did not systematically record the censustrack locations and verbatim opinions voiced by residents who were not interested in participating in our project. However, we learned some of the reasons expressed by residents who declined to participate during weekly meetings of the entire research team in the winter of 2015. Also, we recorded comments made by participants interested in our project during the initial meeting conducted to explain the informed consent process. Due to the reasons expressed above, less than onequarter of the research participants were recruited from the original randomized sample. Following the same criteria and protocol, we fulfilled any remaining openings in our stratified quota by word-of-mouth recruitment of residents of the same neighborhoods whose homes had been previously excluded from spatial randomization. These self-selected participants may have been especially moved by an interest in learning more about our project or by a deeper curiosity about the topic.
Before providing consent to participate, adult residents who expressed interest in our project met with a member of the research team and received a thorough explanation about the topic of genetic ancestry and our research protocols. Consenting residents later met with a member of the research team to answer the face-toface survey that we analyzed here (they also gave saliva samples that were analyzed elsewhere). To ensure demographic representation, the sample was stratified a priori into seven age cohorts (from 18 to 71-plus) by asking participants for their chronological ages at the time of recruitment. In addition, we asked for gender identification as an open-ended question and found that participants only declared two categories: “woman” or “man”; we then stratified our sample by these two gender categories. Also, to ensure genomic representation, we did not accept participants who disclosed close biological relationships (i.e., immediate kin or first cousins) with any other enrolled participants. On the survey form, the following was requested: (a) demographic information (current occupation, educational attainment, birthplace, and length of residence in Luján), (b) family tree information, and (c) responses to two ten-point Likert-scale questions that self-assessed overall knowledge of genetics and level of trust in genetic testing. We asked: “On a scale of 1 (I know very little) to 10 (I know a lot), what is your level of knowledge of genetics?” and “On a scale of 1 (I trust very little) to 10 (I trust a lot), what is your level of trust in the results of a genetic test?”. Thus, participants self-assessed their understanding of genetics choosing from “no knowledge” to “perfect knowledge,” and self-assessed their trust in genetic testing choosing from “no trust” to “a great deal of trust” For this analysis, scores were assessed in five intervals: null or very low (1-2); low (3-4); medium (5-6); medium-high (7-8); high (9- 10). Additionally, we recorded any pertinent comments offered during survey-taking on the back of the survey form. In this paper, we analyzed the participants’ answers to those two questions and their brief comments. Our final sample consisted of 293 participants (51% women, 49% men, aged 18 years and over, Table 1) residing in the same number of households. Our sample represented 4.6% of all 6,302 households in the targeted neighborhoods.
We calculated the mode, median and relative frequencies of knowledge of genetics and trust in genetic testing. Then, Kendall´s Tau-b test (tb) was applied to explore the degree of association between both variables. Finally, we examined the relationship between gender, age, educational attainment, and occupation with the level of knowledge and trust in genetics through Somers’ d test, considering the first four demographic variables as explanatory variables (Agresti, 2010). Both statistical tests are based on the number of concordant and discordant pairs of observations. Their values range between -1 and 1, where 1 indicates perfect association independently of the arithmetic sign. Positive associations indicate a higher frequency of concordant than discordant pairs, whereas negative values indicate the inverse. Statistical significance was set at 0.05 using IBM SPSS Statistics for Windows v. 24.0.
RESULTS
Participants indicated relatively medium knowledge about genetics (Mode= 5; Median= 4.75) and high levels of trust in genetic testing (Mode= 10; Median= 9) (Figure 1). Knowledge about genetics and trust in genetic testing were significantly associated, but the level of association was low (tb= 0.117, p= 0.025). Figure 2 shows that the lowest levels of trust in genetic studies correspond with the lowest levels of knowledge about genetics. Still, there is no clear correspondence between the highest levels of both variables. Some participants (n= 41, 14%) self-reported both null or very low knowledge and a great deal of trust in genetic testing.
Figure 1 Bar chart of score frequencies for participants’ knowledge about genetics (A) and trust in genetic testing (B)
Figure 2 Relationship between participants’ self-assessed scores for knowledge about genetics and trust in genetic testing
Educational attainment was the only demographic variable associated with knowledge about genetics, but the association level was low (d= 0.139; p= 0.008). The participants with incomplete elementary school were the only ones that did not declare a mediumhigh or high knowledge about genetics. In contrast, a large percentage of the participants with the highest level of education reported to have none to a low level of knowledge (Figure 3). No statistically significant associations were found between participants’ level of educational attainment and trust in genetic testing nor with participants’ knowledge and trust with gender, age, and occupation.
DISCUSSION
Studies of trust (interpreted in our survey as confianza) often emphasize the optimistic acceptance of a vulnerable situation in which the person who trusts believes the trustee will care for the truster’s interest (e.g., Hall et al., 2001). Following Dietz (2011), we considered that trust is based on assessing the other party’s trustworthiness. People generally develop their beliefs and assessments of trust in genetics and other matters using social experiences and any technical knowledge they may have (Condit, 2010). A recent study of trust in genetics distinguished one of two components in the attitudes of the interviewees: (1) the interpersonal relationships of an individual with healthcare professionals and (2) a macro level of trust in institutions or systems (Schumann et al., 2021). Some of the participants’ comments recorded in the survey form suggest the presence of these two components in public levels of trust. For example, during survey-taking, some participants made the following comments:
(a) “[Genetics]… is one of the greatest advances ever made.”
(b) “There is nothing more credible than genetics.”
(c) “[Genetics] … is one of the few things still reliable in Argentina.”
(d) “[I trust it] 99.9 percent.”
(e) “[I trust it] with a margin of error.”
Most participants self-assessed their level of trust as medium to high. This might appear as an expected outcome, possibly related to individual interest and curiosity about genomics. However, because studies carried out among different populations over time likewise detected high levels of public trust in genetics (Human Genetics Commission, 2001; Ishiyama et al., 2008; Condit, 2010; Henneman et al., 2013; Hishiyama et al., 2019), the medium-to-high levels of trust among participants in our project could be related to additional variables that we do not currently understand. Some participants in our project expressed what researchers have described as “healthy skepticism” or “selective mistrust” (Schumann et al., 2021) by making, for example, the following comments during surveytaking:
(a) “It depends on the quality of the laboratory and the honesty of the professionals.”
(b) “[It depends on] credibility/reputation.”
(c) “It depends on what it is used for.”
Comparable to attitudes of the public engaged in studies on trust in human genomics in the so-called Global South (de Vries et al., 2014), participants in our project highlighted the importance of knowing whom to trust when explaining their level of trustworthiness in geneticists and laboratories. Many of them, during the initial encounter to discuss the informed consent process, said that they would consent to participate because our project was a collaborative effort between faculty and assistants at the local university and researchers based in universities of the United States. These participants appreciated that our project was not an entirely “foreign” initiative. Thus, people’s participation was partially grounded in their trust in local institutions. Other studies of trust in genetics in different populations over time found that people based their trust on their previous experiences of trusting local institutions (Human Genetics Commission, 2001; Ishiyama et al., 2008; Condit, 2010; Moodley and Singh, 2016; Hishiyama et al., 2019).
Some residents who declined to participate expressed just the opposite arguments. They said that the foreign component of our collaborative research team, explained in the letter of invitation received by all the randomly selected households, made them feel distrust of our project. A recent study highlighted the importance of analyzing both mistrust and trust because mistrust points to conditions considered problematic (Schumann et al., 2021). In this work, participants who expressed misgivings referred to their interest in not being subjected to “imperialist” attitudes by research projects funded by scientific institutions in the United States. Residents who declined to participate also raised concerns about sharing personal genetic data with the research team. The issue of sharing genetic data seems to be very controversial everywhere, and people are hesitant, especially when it comes to sharing genomic data internationally. A review by Majumder et al., (2016) indicated that concerns about misuse of DNA created public distrust and people resisted participating in projects that could potentially misuse or manipulate their genetic material. In the Global South, people recalled instances of “helicopter genetics,” describing occurrences of scientists from developed countries “descending” on developing countries to carry out research incompatible with standards of ethics and then using research data without proper credit to local teams and without sharing benefits with the local populations. Comparable to what was documented among the public of other countries (Majumder et al., 2016; Schumann et al., 2021), people’s suspicions in our survey could be interpreted as political statements, articulated critiques of researchers employed by private corporations that profit from accessing local genetics data, or both. In recent literature reviews of empirical studies, reviewers argued that public understanding of genetic testing evolves over the years, and populations in different countries often hold particular views about genomics due to variable exposure to information about genetics and differences in their public health systems (e.g., Henneman et al., 2013; Chokoshvili et al., 2017; Kvaratskhelia et al., 2021).
The participants in our study said (usually during the initial meeting to discuss the informed consent) that they learned Mendelian genetics from elementary through high school and expanded their understanding of molecular genetics as they advanced in their education. In the two urban neighborhoods of Luján, people said that they usually accessed information about genomics through TV programs, the Internet, print, and social media. Generally, people were familiar with concepts such as genes and DNA and understood that parents pass hereditary material to their children. Rather than utilizing linear models of transmission of information to interpret the process of receiving and processing information -as was assumed by previous research (e.g., Michael and Carter, 2001; Petersen, 2001; Levitt, 2003)- the participants in those urban neighborhoods in Argentina, like elsewhere, appear to utilize complex and critical approaches to handle scientific information, not directly related to formal schooling. As argued by Bates (2005), formal schooling would only inform part of the public’s understanding of recent advances in genetic technology. Typically, people would form their ideas by critically dealing with messages about genetics seen in news media, popular television, documentaries, and science-fiction films. Thus, to a large extent, popular culture, more than formal education, would shape people’s understanding of genetics. Elaborating on participant’s knowledge of genetics during the initial meeting to discuss the process of informed consent, several of them mentioned their awareness of ongoing forensic anthropology investigations to identify the victims of state repression and the children of missing persons (desaparecidos) during Argentina’s military dictatorship (1976-1983) (Jelin, 2009; Penchaszadeh, 2011; Guglielmucci, 2013; Kling et al., 2017; Lerman, 2017). Widespread public awareness of DNA-based forensic genetics research in Argentina could have contributed to the participants’ self-reported knowledge/understanding of genetics, regardless of their educational attainment. Also, wellknown media stories of DNA-based forensic genetic identification may have contributed to the participants’ self-assessed high level of trust.
Overall, researchers in other countries have found no clear statistical patterns connecting people’s level of genetic knowledge and their attitudes toward genetics. Research and literature reviews suggest that the effects of education could be contradictory (Condit, 2010; Etchegary, 2014; Chapman et al., 2019). Nonetheless, education continues to be a pertinent demographic variable in field studies about knowledge and trust in genetics. In our survey, educational attainment was associated with knowledge, but the association level was low. Some researchers found that greater knowledge about genetics was correlated with the level of education and associated with trust in the benefits of genetic testing, but other studies pointed to the opposite (Bםrף et al., 2020). Highly educated people with considerable knowledge about science would sometimes express more criticism and be less trusting about genomic developments than individuals with lower levels of education (Jallinjoa and Aro, 2000). People in the so-called Global North have expressed skepticism about genetic tests, a development that Schumann et al. (2021) attribute to the decline of trust in authorities, experts, and institutions. The rather impressive level of self-assessed trust in genetics in our survey could instead point to the optimistic acceptance of science identified by Hall et al. (2001).
A limitation of our analysis is that with the two questions in our survey we assessed people’s knowledge of and trust in genetics only among those urban residents who consented to participate in our project. Further research is needed to examine responses by other residents in larger randomized samples residing in neighborhoods with different socioeconomic levels, and in rural locations. We did not systematically record the census-track location and verbatim opinions voiced by residents who declined to participate, but we learned about the reasons expressed by people who were not interested in our project during regular updates by members of our research team. Moreover, although our initial intention was to work with a probabilistic sample, the analyzed sample is not probabilistic. Thus, our inferential analysis of the results must be taken with caution.
CONCLUSION
Studying the levels of trust (interpreted as confianza) that people place on genetics and learning how they selfassessed their knowledge (interpreted as conocimiento) about genetics are important because shifting individual perspectives may influence people’s willingness to participate in research projects that incorporate genetic testing. The 293 responses to the two ten-point Likertscale questions self-assessing the overall knowledge of genetics and the level of trust in genetic testing in Argentina, could offer a preliminary baseline to start developing new research paths for future studies on the topic. Our analysis leads us to conclude that paying attention to issues of trust and mistrust in the community could facilitate and improve the process of obtaining an ethically sound and socially acceptable informed consent for research projects.
