Your DNA, your concerns: public attitudes toward donation of genomic data for research in four Latin American countries

Abstract

Background

“Your DNA, Your Say” (YDYS) is an anonymous online survey covering attitudes towards genomic and medical data sharing for research purposes. This study aims to identify factors influencing willingness to donate genetic information in Latin America and explore concerns regarding data donation.

Methods

Responses to the YDYS survey were collected using a mixed recruitment strategy for participants in Argentina (N = 919), Brazil (N = 1,349), Costa Rica (N = 469), and Mexico (N = 1,347). The survey assessed willingness to donate genetic and medical data, perceptions regarding third-party access, use and disclosure of such data, levels of trust, and concerns about potential harms resulting from loss of anonymity. Sociodemographic information was also collected. Three indexes—Willingness to Donate, Know Me, and Against Me—were constructed, and regression analyses were conducted to examine associations between sociodemographic variables and these measures.

Results

Willingness to donate data is higher when profit is not involved. Concerns measured by the “Know Me” index are lower among women and individuals with a high willingness to donate, and higher for individuals with tertiary education. For the “Against Me” index, concern decreases with age and willingness to donate, and increases for people that have children, are religious, and have university education. In general, young age, having children, tertiary education level, and showing reduced levels of concern are associated with a higher willingness to donate genetic information.

Conclusions

This is one of the first studies exploring attitudes toward genetic data sharing in Latin America. This knowledge can guide strategies to ensure inclusion and diversity in future genetic studies.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1007/s12687-026-00947-y.

Introduction

A growing volume of genomic data is being generated in the field of human health, facilitated by the reduction in costs associated with various sequencing techniques, including both whole genome sequencing (WGS) and whole exome sequencing (WES). Future cost reductions are anticipated with the development of improved sequencing devices that offer greater read density and read length per chip (Teufel and Sobetzko 2022). The increasing relevance of access to such massive sequencing data lies in its potential use across various contexts, addressing numerous questions in both biological and public health fields, and thus providing a rich resource for subsequent scientific analysis and future clinical applications.

Large-scale genomic and medical data generated by research groups can be utilized in specific contexts such as public health and scientific research. It is estimated that by 2020, global health data reached 2,314 exabytes (10^18 bytes), and genomic data is projected to reach 25 petabytes (10^15 bytes) by 2030. The use of big data holds the potential for greater “precision” in public health. Increased individual-level data can contribute to improved population health by allowing the integration of various social and environmental risk factors through large-scale data analysis (Khoury et al. 2020).

In order to use this valuable resource, medical and genomic data is commonly stored in repositories and/or biobanks. This facilitates the handling of carefully curated information and annotated biological samples for various applications by researchers from multiple scientific fields, thereby maximizing its utility and relevance. As more well-characterized, high-quality samples and associated data from diverse populations become available through biobanks and repositories, research will progress more rapidly and have a more significant impact on contemporary medical care (Brancato et al. 2024; Gallagher et al. 2025).

The Participant Values Task Team of the Regulatory and Ethics Group at GA4GH developed the “Your DNA, Your Say” survey (Middleton et al. 2018), an online anonymous survey designed to explore the opinions and perceptions of the general public regarding the access, sharing, and donation of genetic and medical data. The survey addresses participants’ views on sharing their data with different groups, including medical doctors, non-profit researchers, and for-profit researchers, as well as perceived harms and fears, expectations regarding the treatment of shared data, and factors influencing trustworthiness. Participants were also presented with a list of hypothetical scenarios, potential problems, or concerns that could arise if their genetic information were linked to their personal data. Given the sensitive nature of medical-genetic data, individual informed consent is required for the use of such information. Because decisions regarding access to and donation of personal medical and genomic data may be influenced by social perceptions and opinions across cultures, the “Your DNA, Your Say” survey provides an important tool for researchers to analyze how these perceptions may shape individuals views on the use, sharing, and donation of their genetic and medical data.

Results from the application of this and other surveys have shown that decisions and perceptions regarding sharing of personal genetic information are influenced by several sociodemographic factors such as age, gender, educational level, religiosity, marital status, whether the person has children, and country of origin, among others (Adu et al. 2021; Baines et al. 2024; Brall et al. 2021; Chavarria-Soley et al. 2021; Goodman et al. 2017; King et al. 2012; Lee et al. 2022; Mählmann et al. 2018; Milne et al., 2019; Sanderson et al. 2017; Sanz de Acedo Lizárraga et al., 2007; Tosoni et al. 2021; Vidgen et al. 2020; Voigt et al. 2020).

In this paper, we present the results of the survey in four Latin American countries (Argentina, Brazil, Costa Rica, and Mexico). For this, we created three indexes (one for willingness to donate and two for concerns regarding donation) based on questions from the survey, which we believe can help in the understanding of factors associated with attitudes regarding donation of genetic/medical information. To the best of our knowledge, this is the first study to analyze perspectives and concerns on genetic data sharing of individuals from Latin American countries, and in relation to other regions of the world. We believe these findings contribute to a better understanding of what drives people to share genetic and medical data and can support the development of data-sharing policies for international biomedical research that respect sociodemographic, cultural and historical differences.

Methods

The instrument

The present study is based on the analysis of the responses from Argentina, Brazil, Costa Rica, and Mexico to the cross-sectional anonymous survey “Your DNA, Your Say”. The complete survey can be accessed at www.YourDNAYourSay.org, where it is available in 18 languages. Detailed information regarding specific aspects of the survey can be found as extended data at the official project website www.YourDNAYourSay.org (Middleton et al. 2018).

The main aim of the survey is to explore, through various questions, the opinions and perceptions of the general public regarding the access, sharing, and donation of their genetic and medical data to third parties. Through 29 questions, the participants are asked about general socio demographic information, their internet footprint, familiarity with terms such as genetics and genomics, opinions on who should have access to genetic and medical data, perceived risks and concerns, expectations for how shared data should be handled, and the factors that influence their trust in data sharing and security. Completing the survey takes approximately 15 to 20 min.

Recruitment of participants

Recruitment of participants followed national and international bioethical regulations for anonymous surveys. Participants from Argentina (N = 919), Brazil (N = 1349), and Mexico (N = 1347) were recruited via the market research company Dynata (formerly ResearchNow). The aim was to recruit a sample that was as representative as possible of each country’s population with regard to gender, age, and education level. During recruitment, respondent characteristics were monitored in order to specifically recruit underrepresented population categories, and a small compensation (<£1) was paid to each participant (Middleton et al. 2020). In Costa Rica, 469 individuals were surveyed at a later time using a mixed strategy, including social media posts, WhatsApp messages through a local marketing company (using a private database of cell phone numbers), phone calls (using the national database of cell phone numbers), and interviews. Individuals under 17 years of age were excluded. Phone calls and interviews strictly followed the script of the online survey.

There are some limitations in our study. Online surveys are a convenient method for gathering large amounts of data, but they have been criticized for their low/unknown response rates, as well as for resulting in samples which are not representative of the general population (Andrade 2020; Frippiat et al. 2010; Van Gelder et al. 2010). In the present study, active measures were taken during recruitment in order to improve representativeness of the samples. Perfect representativeness, however, cannot be achieved. Both the online survey strategy and the phone call or interview strategy can lead to biases in the results which stem in part from who decides to start to answer the survey and who is willing to complete it. For the four countries individuals with tertiary education were overrepresented, which is probably explained by the nature of the survey, its subject, and its length.

Statistical analysis

For this analysis, we included the following sociodemographic factors: individuals’ age recorded in 10-year intervals starting from age 21 (and a separate category for individuals 17–20 years of age); whether they have children; their relationship status (‘Divorced’, ‘Separated’, ‘Single’, ‘Widowed’, ‘Married/Civil partnership/Living together’); the highest level of education attained (‘Tertiary’, ‘Secondary’, ‘Primary’, or ‘Other’); and self reported religiosity (‘A religious person’ or ‘Not a religious person’). In this study, three survey questions were used to construct the Willingness to donate Index, with responses of “No”, “I’m not sure”, or “Yes”; for example, “Would you donate your DNA and medical information for use by medical doctors?”. The Know me and Against me Concern Indexes included five and seven questions, respectively, with responses ranging from “Not bothered” to “Very concerned”. Supplementary Table 1 provides examples of the questions, response options, survey domains, and number of items used to construct each index.

Also included in the analysis was whether the participants would donate their ‘anonymous’ DNA and medical information for research purposes (with a glossary definition clarifying that complete anonymity is not achievable) to three categories of recipients: (a) to medical doctors, (b) to nonprofit researchers, and (c) to for-profit researchers. In each case, the possible responses regarding data donation preference were (a) “No”, (b) “I’m not sure”, or (c) “Yes”. Responses from participants were used to create an index named “Willingness to donate”. For each category of recipient of genetic data (medical doctor, non-profit researcher, for-profit researcher), the “Unwilling to donate”, “Not sure”, and “Willing to donate” responses were respectively assigned a score of 0, 1, or 2. A person’s scores for each category were added and the variable was then standardized to a 0-100 scale, where higher values indicate a greater willingness to donate genetic information.

We also analyzed the section in which participants were presented with a list of hypothetical scenarios, potential problems, or concerns that could arise if their genetic information were linked to their personal data. The list of hypothetical concerns was generated from pilot work, academic literature, and the experience of the Global Alliance for Genomics and Health experts who designed the survey (Middleton et al. 2018). For each item on the list, participants had to select one of four possible answers: “Not bothered”, “I’m not sure”, “Concerned”, or “Very concerned”. We used factor analysis to find correlated items and then created two “Concern Indexes” intended to capture different features of this concern.

The first one, called “Know me”, refers to the fear of losing anonymity of personal data. Five potential concerns from the possible scenarios were included: (1) My friends potentially knowing something about me that I hadn’t chosen to tell them; (2) My family potentially knowing something about me that I hadn’t chosen to tell them; (3) My government potentially knowing something about me that I hadn’t chosen to tell them; (4) Police potentially knowing something about me that I hadn’t chosen to tell them; (5) Marketing companies targeting me to sell me products. The original scale (0 “Not bothered”, 1 “I am just not sure”, 2 “Concerned”, 3 “Very concerned”) was normalized and standardized to a 0-100 metric, with higher values reflecting higher levels of concern. The average value of the Know me Index is 47 points. The Cronbach’s Alpha value for all 5 items is 0.76.

The second Index was named “Against me”. In this case, the index corresponds to concerns related to direct consequences (discrimination, incrimination in crimes, etc.) for participants. Seven potential concerns were included in the index: (1) Being stigmatised and labelled in some way online; (2) Being cloned; (3) My DNA being copied and then planted at the scene of a crime; (4) Health or life insurance companies using the information to discriminate against me; (5) Employers using the information to discriminate against me; (6) Upsetting my genetic relatives (because my DNA information is similar to their DNA information); (7) Ethnic identification and racial discrimination. Like in the previous case, the original scale (0 “Not bothered”, 1 “I am just not sure”, 2 “Concerned”, 3 “Very concerned”) was normalized and standardized to a 0-100 metric. The average value of the Against me Index is 68 points. Cronbach’s Alpha value of all 7 items is 0.84.

Two sets of statistical models (four in total) were used to analyze the correlates related to individuals’ concerns regarding the donation of genetic data. Using the “Willingness to donate” index as an independent variable together with a set of sociodemographic items like age, gender, country, education level, having children, marital status, and religiosity, we ran two regression models to study the relationship between these variables and the levels of concern regarding potential loss of anonymity (indexes “Know me” and “Against me”). Additionally, the analysis was repeated with the “Know me” and “Against me” concern indexes and sociodemographic factors as independent variables, and “Willingness to donate” as the dependent variable. In this case the purpose was to understand how individuals’ concerns and sociodemographic factors impact the disposition to share genetic data. An additional fifth model with “Willingness to donate” as the dependent variable was used to test the potential interaction between age and having children, and age and education level.

Results

In the present study, we have analyzed responses to the Your DNA, Your say survey from four Latin American countries: Argentina (N = 919), Brazil (N = 1349), Costa Rica (N = 476), and Mexico (N = 1347). A summary of the sociodemographic characteristics of the sample for each country and for the overall study sample (“All countries”) is presented in Table 1.

Table 1.

Sociodemographic characteristics of respondents of the “Your DNA Your Say” Survey from Argentina, Brazil, Costa Rica, and Mexico

Country		Argentina		Brazil		Costa Rica		Mexico		All countries
Variable	Categories	Total (n = 919)		Total (n = 1349)		Total (n = 469)		Total (n = 1347)		Total (n = 4084)
		N	%	N	%	N	%	N	%	N	%
Age a	30 and under	233	25.35	412	30.54	177	37.74	409	30.36	1231	30.14
	31–40	192	20.89	301	22.31	112	23.88	337	25.02	942	23.07
	41–50	159	17.30	268	19.87	80	17.06	293	21.75	800	19.59
	51–60	197	21.44	237	17.57	58	12.37	181	13.44	673	16.48
	Over 60	138	15.02	131	9.71	42	8.96	127	9.43	438	10.72
	Missing	0	0	0	0	0	0	0	0	0	0
Gender	Female	485	52.77	723	53.6	282	60.13	694	51.52	2184	53.48
	Male	434	47.33	626	46.4	175	37.31	653	48.48	1888	46.23
	Missing	0	0	0	0	12	2.56	0	0	12	0.29
Children	No	282	30.69	458	33.95	225	47.97	503	37.34	1468	35.95
	Yes	620	67.46	872	64.64	231	49.25	828	61.47	2551	62.46
	Missing	17	1.85	19	1.41	13	2.77	16	1.19	65	1.59
Education	Tertiary	589	64.09	874	64.79	274	58.42	1159	86.04	2896	70.91
	Secondary	280	30.47	366	27.13	135	28.78	103	7.65	884	21.65
	Primary	18	1.96	53	3.93	48	10.23	4	0.30	123	3.01
	Other	32	3.48	56	4.15	12	2.56	80	5.94	180	4.41
	Missing	0	0	0	0	0	0	1	0.07	1	0.02
Religiosity	Not a religious person	402	43.74	336	24.91	199	42.43	504	37.42	1441	35.28
	A religious person	516	56.15	1013	75.09	270	57.57	843	62.58	2642	64.69
	Missing	1	0.11	0	0	0	0	0	0	1	0.02
Relationship	Married / Civil partnership / Living together	562	61.15	827	61.3	201	42.86	832	61.77	2422	59.30
	Divorce / Single / Separated / Widowed	356	38.74	522	38.7	268	57.14	515	38.23	1661	40.67
	Missing	1	0.11	0	0	0	0	0	0	1	0.02

^aDue to the small sample sizes in the younger age categories, individuals aged 30 years and under were grouped into a single category for the purposes of Table 1

Participants were asked about their willingness to donate their anonymized genetic data and medical information to a database accessible to different research groups. These groups included the following three categories: medical doctors, non-profit researchers, and for-profit researchers. As can be seen in Fig. 1, some participants are willing to donate their genetic data to all potential recipients, while others are consistently unwilling to donate. Alternatively, for an important proportion of participants, willingness to donate information is higher when recipients are medical doctors or non-profit researchers, and drops when potential recipients of their genetic and medical information are for-profit researchers. The response flow shows that most participants who answered “Yes” to donating their data to medical researchers tend to also be willing to donate to non-profit researchers. However, there is a noticeable shift toward “I’m just not sure” and “No” in the case of for-profit researchers, indicating a change in opinion toward indecision or rejection.

Fig. 1.

Willingness to donate anonymized genetic and/or medical data to different types of researchers across samples from Argentina, Brazil, Costa Rica, and Mexico

Next, we restricted our analysis to only participants who are willing to donate their personal genetic/medical information for research, and are sure of their opinion. The two most frequent categories of responses in these individuals are: (a) would donate to medical doctors and non-profit researchers but not to for-profit researchers, and (b) would donate to the three potential recipients of the data. We observed significant variation in distribution of the four Latin American countries between those two types of response (X2 = 10.7, d.f.=3, p = 0.01; Fig. 2). The proportion of individuals who chose to donate only for non-profit use is highest in Costa Rica and lowest in Brazil, with Mexico and Argentina presenting intermediate values.

Fig. 2.

Willingness to donate genetic and medical information for research either excluding or including for-profit uses of the data across samples from Argentina, Brazil, Costa Rica, and Mexico

One of the sections of the survey explores the participants’ concerns regarding donation of their genetic/medical data in case anonymity would be lost. For each of 12 potential concerns, respondents chose which ones concerned them. As described in the methods section, we used this information to create two “Concern Indexes” for our study: the “Know me” index, and the “Against me” index. The “Know me” index groups concerns related to other people knowing something about participants that they do not wish to share. Meanwhile, the “Against me” index groups concerns related to direct consequences (discrimination, incrimination in crimes, etc) for participants. We used a regression analysis to study the effect of sociodemographic factors, as well as the “Willingness to donate” variable on scores for both Concern Indexes. Table 2 summarizes these results.

Table 2.

Results for regression analysis exploring the effect of factors influencing levels of concern in respondents from Argentina, Brazil, Costa Rica and Mexico in the case of loss of anonymity of their personal data

	Dependent variable: “Know Me” Indexa	Dependent variable: “Against Me” Indexa
Age	-0.620 (0.34)	-1.031** (0.32)
Gender	-1.922* (0.90)	1.567 (0.84)
Children	1.587 (0.98)	2.954** (0.92)
Country	1.177* (0.48)	0.945* (0.45)
Religion	-1.595 (0.95)	3.017*** (0.89)
Education	2.904*** (0.41)	1.591*** (0.38)
Marital Status	-0.155 (0.51)	0.169 (0.47)
Willingness to donate	-2.296*** (0.24)	-1.319*** (0.22)
Constant	45.982*** (3.48)	59.257*** (3.26)
R-sqr	0.037	0.020
Dfres	3929	3929
BIC	37554.0	37038.9

^aValues in parentheses are standard errors (SE)

Asterisks indicate statistical significance: * p < 0.05, ** p < 0.01, *** p < 0.001

For the “Know me” index, levels of concern are lower in women compared to men, and in people with high willingness to donate their information. Higher levels of concern are seen in Mexico than in the other countries, as well as in individuals with higher education levels. In the case of the “Against me” index, levels of concern are lower in older individuals, and in people with high willingness to donate their information. Meanwhile, factors related to higher concerns are having children, being religious, and as in the previous index (“Know me”), coming from Mexico, and having a higher education level.

Given that responses from all participating countries in the “Your DNA, Your Say” survey are available, we decided to explore each country’s mean scores for the “Know me” and “Against me” indexes. As can be seen in Fig. 3, Japan and Germany stand out as the countries with the highest scores for concern for both indexes. On the opposite side of the spectrum, Sweden shows particularly low levels of concern. Among Latin American countries, Argentina, Brazil and Costa Rica are grouped close together in their level of concern, which is on the lower end of the distribution. Meanwhile, Mexican individuals are more concerned both with other people knowing information about them, and potential negative consequences.

Fig. 3.

Country comparisons of “Know me” and “Against me” Concern Indexes scores from the “Your DNA, Your Say” Global Survey

We then used regression analysis to explore factors influencing willingness to donate genetic or medical information. For this, we used the “Willingness to donate” variable we created as the dependent variable. We used two models which both include the same list of sociodemographic variables and differ in the “Concern Index” included (“Know me” in model 3, “Against me” in model 4). Age, having children, education level and Concern Index scores are all significantly associated with willingness to donate genetic or medical information. Model 5 was used to test for interaction between independent variables; no significant interaction was found between age and either education level or having children regarding willingness to donate data. Our results are summarized in Table 3.

Table 3.

Results for regression analysis exploring the effect of factors influencing willingness to donate medical or genetic data for research in respondents from the survey from Argentina, Brazil, Costa Rica, and Mexico

	M3: Dependent variable: Index of willingness to donate genetic informationa	M4: Dependent variable: Index of willingness to donate genetic informationa	M5:Dependent variable: Index of willingness to donate genetic informationa
Age	-3.284*** (0.38)	-3.343*** (0.38)	-1.636 (1.60)
Gender	0.849 (1.01)	1.376 (1.01)	0.839 (1.00)
Children	8.524*** (1.09)	8.713*** (1.09)	10.747*** (3.29)
Country	0.646 (0.53)	0.558 (0.54)	0.642 (0.531)
Religion	0.211 (1.07)	0.837 (1.08)	0.204 (1.07)
Education	2.944*** (0.45)	2.663*** (0.46)	3.859*** (1.37)
Marital Status	0.194 (0.57)	0.243 (0.57)	0.152 (0.569)
Know Me	-0.172*** (0.02)		-0.165*** (0.021)
Against Me		-0.114*** (0.02)	-0.013 (0.022)
Interaction ageXchildren			-0.513 (0.726)
Interaction ageXeducation			-0.205 (0.283)
Constant	58.933*** (3.86)	58.561*** (3.97)	52.641*** (7.49)
R-sqr	0.055	0.041	0.055
Dfres	3929	3929	3926
BIC	38428.6	38487.3	38492.4

^aValues in parentheses are standard errors (SE)

Asterisks indicate statistical significance: * p < 0.05, ** p < 0.01, *** p < 0.001

In particular, younger individuals, people with children, and people with tertiary education level are more likely to be willing to donate their medical/genetic information for use in research (Fig. 4). Conversely, older individuals and participants with higher levels of concern in the “Know me” and “Against me” indexes are less willing to share their information with others. Country of origin, gender, religiosity and marital status do not significantly influence willingness to donate genetic and medical information.

Fig. 4.

Sociodemographic factors related to the “Willingness to donate” index. Asterisks indicate statistical significance: p < 0.05

Discussion

In this paper we present results of the “Your DNA Your Say” survey for four Latin American countries, Argentina, Brazil, Costa Rica, and Mexico. We had previously reported preliminary results from a study conducted with a pilot sample from Costa Rica (Chavarria-Soley et al. 2021); for the present study, we recruited a new larger sample from Costa Rica to compare with the results from the other 3 countries. Additionally, we analyze the results from the 4 countries as a unified entity to compare with other countries of the world. This research expands the analysis to provide a more comprehensive and comparative view of attitudes and concerns toward genetic data and privacy in the Latin American context.

The Latin American countries included in our sample appear to share a similar viewpoint regarding data donation to third parties. In general, there is a high willingness to share genetic and medical data for research. When considering the overall willingness to share personal genetic and/or medical information we observed similar attitudes towards medical doctors and non-profit researchers (over 60% of participants willing to donate their information to these two categories of recipients), suggesting that these actors are perceived in a comparable manner. In contrast, individuals are less in favor of sharing their personal genetic and/or medical information with for-profit researchers (37% of participants willing to share their information).

The reduced willingness to donate medical and genetic data in case of for-profit use of the information has been previously reported. Benevento et al. (2023) found that patients are generally willing to share their Protected Health Information (PHI) primarily with providers directly involved in their medical care, but commercial use significantly reduces the willingness to share such information. Furthermore, on a global scale, scientific institutions are generally regarded as more trustworthy than governments or commercial entities (Pronicki et al. 2023). Evidence from several countries shows that individuals are more likely to share their genetic and medical information with nonprofit researchers, such as public institutions, hospitals, and universities (Cascini et al. 2024; Chavarria-Soley et al. 2021; Mählmann et al. 2018; Milne et al. 2021). Medical and/or genetic data donation is often seen as an altruistic act, which can explain the unfavorable perception linked to for-profit use of this information (Levitt and Weldon 2005; Nunes Vilaza et al. 2021; Trinidad et al. 2010).

Compared to Argentina, Costa Rica and Mexico, Brazil presents a slightly higher proportion of individuals willing to donate their data regardless of whether the recipient entity operates for profit or not. The lower aversion to profit reflected in the responses of participants of Brazil may in part be due to the particular interaction between universities and private companies in Brazil. The Brazilian government has made efforts to create state research agencies and foster technological innovation programs between companies and universities and research institutes, in which projects are funded with both public and private funds. Furthermore, the existence of the Innovation Law in Brazil has fostered public-private partnerships that protect both intellectual property and technology transfer between these two sectors (Rapini et al. 2019).

We created the “Know me” and “Against me” indexes, as well as the “Willingness to donate” variable in order to understand how different factors influence people’s perception of genetic data donation, which could be useful for studies in other countries. As expected, there is a link between level of concern and willingness to donate. A greater willingness to donate genetic information is associated with lower scores in the “Know me” and “Against me” Concern Indexes. This suggests that individuals who worry less about what other people know about them and perceive less risk associated with the potential uses of that information tend to be more willing to share their genetic information.

When exploring the factors that influence levels of concern and willingness to donate data, we find that higher levels of education are associated both with more concern (for both indexes) regarding the potential impact of loss of anonymity, and with more willingness to donate personal medical or genetic information. This seemingly contradictory result might suggest that individuals with higher educational levels have greater knowledge of the risks and benefits of sharing genetic information, but often decide that the benefits outweigh the potential risks. A correlation between high level of education and willingness to donate medical and genetic data has been previously reported in results of the Your DNA Your Say survey for Germany, United Kingdom, United States of America, Canada and Australia (Milne et al., 2019; Voigt et al. 2020). Meanwhile, in other countries like Italy, an education below the tertiary level has been associated with a lower overall willingness to share this data (Romano et al. 2021). Higher educational attainment has also been reported to correlate with a positive attitude towards genetic testing (Balck et al. 2009), and willingness to donate medical or genetic data (Baines et al. 2024; Brall et al. 2021; Broekstra et al. 2022; Goodman et al. 2017; Lee et al. 2022; Milne et al., 2019) .

Regarding religiosity, we find that religious individuals are more concerned with the potential direct consequences of sharing genetic information than non-religious persons. In a similar manner, other studies have found lower religiosity to be associated with a greater willingness to share data compared to religious participants (Baines et al. 2024; Brall et al. 2021; Sanderson et al. 2017). The relationship between religiosity and an individual’s willingness to donate, according to Domaradzki and Walkowiak (2024), can serve as a double-edged sword. Religiosity may boost participation by appealing to altruism and the greater good, but it can also hinder it if donors fear research could conflict with their values (Domaradzki and Walkowiak 2024).

Country of origin shows a significant but slight effect on levels of concern, indicating that cultural differences between countries may influence attitudes toward genetic information. In particular, Mexican individuals had higher concern scores in both the “Know me” and “Against Me” indexes, as is evident in Fig. 3 (Fig. 3). However, we found no association between country of origin and willingness to donate medical and genetic data.

In our sample, having children is associated both with greater concern about potential direct negative consequences, and also with an increased willingness to donate personal medical and genetic data for research purposes. Having children has been previously linked to a higher willingness to allow release of genomic data to public data banks (Etchegary et al. 2023). Even though parental responsibility might lead to greater concern about the risks of sharing information, it has been proposed that the high willingness to donate genetic and medical data among individuals with children can be attributed to a desire to positively impact the quality of life of present and future generations (Baines et al. 2024; Brall et al. 2021; Kettis-Lindblad et al. 2006).

Regarding the influence of age on perception of genetic data sharing, in our Latin American sample older individuals are less concerned with potential negative consequences directly affecting them in case of loss of anonymity, but -in agreement with previous findings- are in general less willing to donate their genetic information than younger people (Brall et al. 2021; Goodman et al. 2017). There are conflicting reports on the influence of age on willingness to donate personal information, which has been suggested to be due to an incomplete exploration of the interrelated sociodemographic factors which influence the willingness to share health information (Naeem et al. 2022). Some studies have reported that older people are more comfortable with sharing health information (Brown et al. 2016; Mählmann et al. 2018; Vidgen et al. 2020), while others found them to be less willing as older users are less comfortable with information technology and, therefore, less likely to share health information (Cocosila and Archer 2014). Meanwhile, other studies have found no relationship between age and sharing health information for research purposes or to improve clinical care (Kerath et al. 2013; Spooner et al. 2017).

We also tested the possibility that age interacts with having children and education, i.e. that older individuals are less willing to donate when they have no children versus when they have, and that education mediates willingness to donate. However, the results are not statistically significant (see Table 3).

We took advantage of the availability of the complete YDYS dataset and analyzed the levels of concern captured by the “Know Me” and “Against Me” indexes for all participating countries in the YDYS survey. Individuals in Japan and Germany share a high level of concern of both knowledge others may gather about them, and potential consequences against them, in case the anonymity of their data would be lost. Sweden shows particularly low levels of concern for both indexes, while Latin American countries are located between these extremes, with a tendency towards low concern values.

In Germany, the concept of informational self-determination grants individuals the authority and responsibility to carefully decide how their personal data are used, leading to an attempt to balance the protection of personal rights with benefits for others, possibly resulting in greater caution in data sharing for research purposes (Voigt et al. 2020). In Japan, data privacy legislation is very strict; a recent amendment to Japan’s Personal Information Protection Law has tightened restrictions on the use of personal/medical data, requiring that information be used only for the specific purposes agreed upon, and thus restricting use of previously collected data (Saeki 2022).

In this context, high levels of concern regarding the potential consequences of loss of anonymity of genetic data are expected. Conversely, in Sweden, a study on trust and privacy in healthcare revealed that a large majority (81.9%) of respondents expressed high levels of trust in the healthcare system’s ability to protect electronic patient data (Belfrage et al. 2022). This trust in data protection could in part explain the low levels of concern for both the “Know Me” and “Against Me” indexes in respondents of the YDYS survey .

Studying the attitudes of Latin American populations towards medical and genetic data donation is crucially relevant for research, since perception of potential participants will influence the consent process. Particular initiatives, such as the establishment of biobanks, also depend on the willingness of individuals of the general public to participate. Currently, with the evident need to highlight population diversity, Latin America is experiencing a significant surge in the establishment of biobanks and large scale genomic projects across countries such as Mexico, Brazil, Chile, and Argentina (Canario 2021; França et al. 2025; González-José et al. 2025; Marodin et al. 2012; Reis and Pêgo-Fernandes 2022; Rivera-Alcántara et al. 2024; Sevlever et al. 2025; Sohail et al. 2023; Sohail and Moreno-Estrada 2024; Valdés and Lecaros 2024). These initiatives are designed to advance research and development in crucial areas, contributing to both scientific inquiry and public health. Knowledge of the factors influencing donation of medical/genomic data in these populations can be helpful in achieving successful and representative recruitment.

In general, in the Latin American countries included in our study there is a positive attitude towards genetic data donation. Our results suggest that young individuals with university education are particularly likely to be willing to participate in research efforts. Different strategies can be implemented in order to improve participation of individuals from other demographic groups. Additionally, our findings underscore the importance of considering both demographic factors and public attitudes and perceptions when developing policies and strategies related to genetic information. It is reasonable to assume that increasing public awareness about the potential uses of genetic information, as well as its associated risks and benefits, would positively impact individuals’ willingness to share their genetic data.

Electronic Supplementary Material

Below is the link to the electronic supplementary material.

Author contributions

All authors contributed to the study conception and design. HR and GC-S initiated the collaboration with the UK team (AM, LR, RM). Data curation was performed by GC-S. Formal analysis was done by GC-S and RA-R. AR-R, GC-S and RA-R participated in visualization. AM was in charge of funding acquisition for the Your DNA, Your Say survey. The first draft of the manuscript was written by AR-R, GC-S, RA-R and HR. AR-R, GC-S, HR, RA-R, and GM-T commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Funding

This work was funded in part by Wellcome grant [206194] paid to the Society and Ethics Research Group, Connecting Science, and by the University of Costa Rica.

Data availability

The data from the “Your DNA, Your Opinion” surveys that support the findings of this study are available from the corresponding author upon reasonable request.

Declarations

Research involving human participants and/or animals

The Your DNA Your Say project complies with appropriate research ethics policy and data protection regulation governing work at the Wellcome Genome Campus in Cambridge. All surveys were completely anonymous in that no personally identifiable data (including no IP addresses) were gathered. Consent was deemed implicit if research participants started to answer the survey; they could refuse and withdraw to complete it at any time.

Competing interests

The authors declare no competing interests.

Conflict of interest

All the authors declare that they have no conflict of interest.