Research finds that minorities don’t trust the system, refuse to share samples for genetic cancer studies

Research shows that minorities tend to be underrepresented in precision medicine studies like those of breast cancer, as the willingness to provide samples depends on oncologist engagement or religion, an article in reports.

Precision medicine is defined as data-driven treatment that takes into account individual factors such as genes, environment, and personal lifestyle.

The study revealed that the women who were more likely to participate in genetic research had earlier-stage and less aggressive breast cancer, were less religious and had better access to healthcare.

Unfortunately, the study was only able to evaluate data from non-Latino whites.

These types of cancer studies help researchers understand why some patients survive and others do not, which might help improve treatment for breast cancer based on genetic information. However, minorities are often underrepresented in genetic research.

According to Vanessa B. Sheppard of Virginia Commonwealth University’s School of Medicine, women are motivated to donate genetic samples like saliva specimens for cancer research based on their socio-cultural factors (the attitudes that define them as a culture), clinical factors (a person’s physiological risk factors), and healthcare process.

“This underrepresentation may diminish the potential impact of precision medicine if we do not know how to best tailor cancer treatment and prevention treatments to individual patient characteristics such as variability in genes, environment, lifestyle, and/or personal preferences,” explained Sheppard.


The current study aims to shed some light on how these drivers influence breast cancer survivors’ participation in genetic research in black and white breast cancer survivors.

The study recruited women with confirmed hormonal-positive breast cancer. A telephone survey collected socio-demographic, socio-cultural (e.g., religiosity), and clinical information that was abstracted from medical records. They were then sent a collection kit and asked to send their samples back.

While the samples provided revealed no differences by race or other demographic factors, the study reveals that women with lower-stage cancer were more likely to donate biospecimens. In addition, cancer care experiences – the time spent with healthcare providers, for instance – and religiosity remained associated with biospecimen provision.

“The most robust healthcare predictor was survivors’ satisfaction with the time spent with their oncologists,” notes Sheppard. (Related: Minorities Are Not Satisfied With Their Health Care.)

Understanding the contextual reasons for lower receipt among women with higher religiosity scores and higher stage warrants further examination, according to the researchers.

“Interventions that target providers or patient-provider communication may be beneficial in the quest towards the inclusion of breast cancer patients and survivors in genetic research; this is an area that is ripe for future research.”

Lack of diversity in genetic studies

An article on asserts that current genetic studies still leave out ethnic and racial minorities in research concerning precision medicine.

A report pointed out that there were 10 times more studies of individuals of European ancestry than there were of all other racial groups combined, including Asians, Hispanics, and Africans or African Americans.

Up to this day, whites of European ancestry still make up over 80 percent of subjects in large genetic studies. While there has been an increase in genetic studies of Asians, (14 percent today), Africans, African Americans, and Hispanics still make up less than four percent of the subjects of these studies.

Limits to DNA technology is one justification for the lack of diversity in these studies. Genetic differences in ancestry, for instance, can mask a relationship between mutations and disease, which makes it challenging to study mixed ancestry of Hispanics and African Americans.

Other reasons for the continued low participation of minority groups include:

  • Limited access to genetic services due to location and socioeconomic factors
  • Lack of awareness of the availability of genetic services
  • A distrust of how genetic information will be used

The most urgent justification appears to be the minorities’ lack of trust in the medical community, despite the Genetic Information Nondiscrimination Act (GINA) of 2008, which protects Americans against discrimination in health insurance and employment based on their genetic information. This suggests that there’s still a long way to go before minorities fully trust the biomedical research community of its potential use of genetic information.

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