Individual attitudes toward medical and genetic data sharing in Latin America and development of two new indexes

20 Nov 2025

Most Latin Americans are willing to share their genetic information for non-profit goals; however, sociodemographic factors and levels of concern in case of loss of anonymity play an important role in the decision.

By Gabriela Chavaría Soley, Ronald Alfaro Redondo, and Henriette Raventós (Universidad de Costa Rica)

“Your DNA, Your Say” (YDYS) is a global survey, which explores people’s perceptions regarding medical and genetic or genomic data sharing for research purposes. Genomic research is increasingly including non-European genetic ancestry populations to enhance understanding of biological mechanisms and improve potential applications for a broader range of communities. Therefore, it is essential to examine data-sharing attitudes within these groups. 

Consistent with this aim, we have analysed the responses from individuals from four Latin American countries — Argentina (N=919), Brazil (N=1349), Costa Rica (N=476), and Mexico (N=1347) — that have not been previously examined. We also developed two indexes which aggregate concerns that individuals have when sharing their medical and genetic or genomic data, and compare these between all participating countries in the YDYS survey. This blog summarises our findings of the paper Romero-Ramirez et al. (in preparation).

In general, data donation is viewed in a positive light in these four Latin American countries. Over 60% of respondents would be willing to share their medical and genomic data with their medical doctors and non-profit researchers (Figure 1). However, when the potential recipient of the information is a for-profit researcher only 37% are willing to share their data (Figure 1). This is a well-known phenomenon; willingness to donate personal data decreases when profit is involved (Cascini et al. 2024, Garrison et al. 2016, Goodman et al. 2017, Levitt et al. 2005, Mählmann et al. 2017, Milne et al. 2019, Nunes-Vilaza et al. 2021, Trinidad et al. 2010). One potential explanation is that data sharing is viewed as an altruistic act that benefits other people and science in general, and profiting from this information is seen negatively.

We explored the factors that influence a person’s decision whether to donate their personal information in these countries. We found that younger individuals, people with children, and with university education are more likely to be willing to donate their medical or genetic information for use in research. Meanwhile, country of origin, gender, religiosity, and marital status did not influence attitudes towards the sharing of personal data in our study. 

In our study, we also wanted to better understand potential concerns of participants if they donated their information and their anonymity was lost. For this, we conducted a factor analysis of the list of potential concerns presented to the respondents and found the best fit grouped the items in two factors. The first was named “Know me” and includes concerns related to other people knowing information about them (Box 1). The second category was named “Against me” and includes potential consequences for participants if their private information can be linked to their name (Box 2).

Using these two groups of concerns, we created two indexes called “Know Me” and “Against me”. In both cases, we use a scale from 0 to 100 points, in which higher numbers mean higher levels of concern. Since the responses for the YDYS survey are publicly available, we calculated both indexes for all participating countries. As can be seen in Figure 2, participants from Japan and Germany have the highest levels of concern if anonymity is lost. Meanwhile, in Sweden, levels of concern are very low. Intermediate levels of concern can be seen in the four Latin American countries in our study. These two concern indexes help us understand the decision-making process faced by participants when asked to donate their genetic information. The particular concerns which are most important to an individual are probably influenced by historical, social, and cultural reasons. 

In summary, a person’s attitude towards genetic or genomic data sharing is shaped by multiple factors, including potential recipients, education level, age, and concerns, among others. The question of how the public views sharing of genetic information is highly relevant to participation in and outcome of biomedical research. The proposed indexes can provide researchers with a stronger understanding of the concerns that influence individuals’ disposition to donate their data. With this information, researchers can design strategies to ease fears of those who are less willing to participate, encourage participation from historically underrepresented populations in genetic research, and build a foundation of trust.

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Cascini, F., Pantovic, A., Al-Ajlouni, Y. A., Puleo, V., De Maio, L., & Ricciardi, W. Health data sharing attitudes towards primary and secondary use of data: a systematic review. EClinicalMedicine, 71, 102551. (2024).

Garrison NA, Sathe NA, Antommaria AHM et al. A systematic literature review of individuals’ perspectives on broad consent and data sharing in the United States. Genet. Med. 18(7), 663–671 (2016). 

Goodman D, Johnson CO, Bowen D, Smith M, Wenzel L, Edwards K. De-identified genomic data sharing: the research participant perspective. J. Community Genet. 8(3), 173–181 (2017). 

Levitt DM, Weldon S. A well placed trust?: public perceptions of the governance of DNA databases. Critical Public Health 15(4), 311–321 (2005). 

Mählmann L, Schee Gen Halfmann S, von Wyl A, Brand A. Attitudes towards personal genomics and sharing of genetic data among older swiss adults: a qualitative study. Public Health Genomics 20(5), 293–306 (2017). 

Milne R, Morley KI, Howard H et al. Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia. Hum. Genet. 138(11–12), 1237–1246 (2019). 

Nunes Vilaza G, Coyle D, Bardram J. Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey. Journal Of Medical Internet Research. 23 (10): e31294. (2023). 

Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EB, Burke W. Genomic research and wide data sharing: views of prospective participants. Genet. Med. 12(8), 486–495 (2010).