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Ethnic Identity and Genomics Research: Toward Creating Culturally Sensitive Policies and Practices

By Erin Turbitt and Megan C Roberts

Genomic discoveries are rapidly entering healthcare, further propelled by large nationally funded initiatives such as the “All of Us” program. However, minority groups risk not benefiting from these discoveries to the same degree as individuals of European descent. This is because most genomics research involves European descended individuals and genomic databases largely consist of data from these studies.

Recently, policies and initiatives have directed attention to address these disparities and boost numbers of individuals from minority groups in genomics research. Examples include:

  1. The National Academies of Sciences Engineering and Medicine’s Genomics and Population Health Action Collaborative
  2. The National Heart, Lung, and Blood Institute’s Trans-Omics for Precision Medicine Program
  3. The National Institutes of Health’s Clinical Sequencing Evidence-Generating Research program (phase II)

As research involving minority groups increases, it is important to better understand how to reach these groups, engage them in research, and support them throughout their research experience.

To date, most work around the preferences and beliefs of minority groups participating in genomic research has focused on differences between racial and ethnic groups. Our paper, recently published in Genetics in Medicine, the peer-reviewed journal of the American College of Medical Genetics and Genomics (ACMG) instead highlights differences among the members of a racial group. In particular, among a cohort of 408 African-descended individuals who had enrolled in genomic research, we measured the degree to which they identify with their ethnic group, their “ethnic identity”.

We further investigated whether ethnic identity correlated with their beliefs about and intentions in a genomic research study. To this end, we used the multigroup ethnic identity measure (MEIM), which asked about participants’ knowledge regarding membership in their ethnic group and the value and emotional significance of that membership. We found that those with a stronger ethnic identity perceived higher value and benefit from participating in genome research, and that these perceptions were positively related to their intentions to receive pertinent genomic results from the research study. In contrast, this link between the benefits and values of participating and intentions to receive results was not seen among those with weaker ethnic identity.

Ethnic identity has been linked to other health-related outcomes as well, through a process that is not yet well understood. It is possible that ethnic identify buffers the stress of discrimination, leading to positive health outcomes. Future research is needed to understand ethnic identity and its relationship to participation in medical research.

Studies such as ours bring attention to the differences within ethnic groups. We suggest that genomics researchers avoid adopting “one-size-fits-all” approaches that could exacerbate disparities. Further work is needed to investigate how such variation may interact with interventions, tools or materials that are designed to recruit, enroll and engage participants in genomic research, thus promoting multicultural practices.

 

Erin Turbitt, PhD, Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, US; Bioethics Core, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA

Megan C Roberts, PhD, Behavioral Research Program, National Cancer Institute, National Institutes of Health, Bethesda, MD, USA

 

This post is part of a digital symposium hosted by Bill of Health in conjunction with the Petrie-Flom Center’s 2019 Annual Conference, “Consuming Genetics: Ethical and Legal Considerations of New Technologies.”

Read the rest of the symposium!

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