Knowing one’s genetic risk of developing cancer can open the door to early detection, preventative surgeries, and screening for family members. However, a new Mexican study found that understanding this risk doesn’t necessarily lead people to take precautionary measures.

The research analyzed knowledge about hereditary cancer in 261 Mexican individuals carrying genetic variants associated with cancer, such as BRCA1 and BRCA2. The work was carried out by researchers from the National Institute of Medical Sciences and Nutrition Salvador Zubirán (INCMNSZ) and TecSalud.

“It’s one thing to be told you got a positive result, and another to understand the background,” says Alejandro Aranda, a doctor and researcher at INCMNSZ and TecSalud, and first author of the article.

To assess this understanding, the researchers used the KnowGene questionnaire, a tool originally developed in the United States. The questions address topics such as the genetic inheritance of cancer, interpretation of results, and prevention.

The average score was 9.42 out of 16, a level of knowledge that the researchers consider moderate.

Although many people understood general concepts about hereditary cancer, doubts persisted about how likely it is to inherit a mutation and how to interpret some results.

“We Were Unable to Demonstrate the Association”

The study also found that people with higher levels of education tended to have a better understanding of genetic information. However, even among patients with higher education, significant gaps remained.

Their most important discovery was that greater knowledge is not related to a greater likelihood of taking preventive actions, such as risk-reducing surgeries or cascade testing, where relatives of a carrier undergo genetic testing.

“The hypothesis was that the more knowledge you have, the more likely you are to take preventative measures, but we were unable to demonstrate that association,” Aranda says.

The finding led them to wonder what other factors influence patients’ decisions.

Structural and Psychosocial Barriers to a Culture of Prevention

The authors, including Aranda, Cynthia Villarreal from TecSalud and Yanin Chávarri from INCMNSZ, argue that although genetic knowledge is important, it is not enough to promote preventive behaviors against hereditary cancer since there are multiple structural and psychosocial barriers that influence patients’ decision-making.

Factors such as limited access to specialized health services, the costs of genetic testing and preventive interventions, lack of medical coverage, educational and socioeconomic differences, as well as emotional and family aspects, can prevent people from taking action even when they understand their genetic risk.

“There is no universal coverage in public and private insurance so that patients can have these types of surgeries and tests,” Aranda points out.

Furthermore, they emphasize that the country lacks oncogenetic infrastructure and has insufficient specialists who can clearly communicate risk. Meanwhile, in doctors’ offices, genetic information is often communicated in a highly technical and difficult-to-understand manner.

“They could use illustrations, digital formats, or even videos to make it more accessible,” the researcher suggests.

The authors acknowledge that the population of their study is not representative of all Mexican society, since most of its participants were women who live in urban areas and have relatively high levels of education, and also because the participants agreed to answer the questionnaire.

However, the study suggests that preventing hereditary cancer depends not only on informing patients and promoting education, but also on building a health system that is capable of supporting them before the disease appears.

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