GCO 625 Module 3 Improving Health Literacy in Genetics: Rewriting a Hereditary Cancer Brochure Example

From Grade 20 to Grade 5: Rewriting a Hereditary Cancer Brochure for the Families Who Need It

Student Name

MS in Genetic Counseling, Arizona State University

GCO 625: Cultural, Ethical and Legal Aspects of Genetics

Instructor Name

Month Day, Year

From Grade 20 to Grade 5: Rewriting a Hereditary Cancer Brochure for the Families Who Need It

Introduction

Genetic information is complex even for readers with strong literacy skills. More than a third of American adults, 36%, scored at the basic or below-basic level on the health literacy scale of the 2003 national assessment (Kutner et al., 2006), and genetics adds vocabulary such as "variant," "penetrance" and "autosomal dominant" that many patients have never encountered. Researchers developing a genetics literacy screening tool drew its terms from the transcripts of more than 150 prenatal and cancer genetic counselors, showing how much specialized vocabulary appears in ordinary sessions (Erby et al., 2008). When brochures are written at a level few patients can read, the people who most need services are least likely to understand that they exist. This assignment revises an illustrative brochure about hereditary cancer genetic counseling.

The Original Brochure (Illustrative)

"Hereditary cancer predisposition syndromes are caused by pathogenic germline variants in cancer susceptibility genes, such as BRCA1 and BRCA2, which are inherited in an autosomal dominant manner. Individuals harboring such variants have substantially elevated lifetime risks of developing breast, ovarian and other malignancies. Genetic counseling facilitates comprehensive risk assessment through evaluation of personal and familial cancer histories, provides education regarding the benefits, limitations and potential implications of molecular testing, and supports informed decision-making. Results may be positive, negative or a variant of uncertain significance, which requires careful interpretation. Insurance coverage and protections under the Genetic Information Nondiscrimination Act should be discussed prior to testing."

Measuring Readability

Both versions were scored with two standard formulas, Flesch Reading Ease and the Flesch-Kincaid grade level, which estimate difficulty from sentence length and syllables per word (Flesch, 1948). Formulas cannot judge whether text makes sense, so I also reviewed the content against the questions a patient would ask.

The Revised Brochure

"Some families have cancer that is passed down from parent to child. This happens when a person is born with a change in a gene, such as BRCA1 or BRCA2. A parent with the change has a 1 in 2 chance of passing it to each child. People with these gene changes are more likely to get breast, ovarian and some other cancers. A genetic counselor will go over your family's health history with you. They will explain what a gene test can and cannot tell you. You decide if you want the test. Your result may show a gene change, no gene change or a change we do not understand yet. Ask us about cost and about laws that protect your genetic information."

Explaining the Changes

The revision uses shorter sentences, active voice and the second person, addresses the reader directly and keeps one idea per sentence. It also keeps the facts patients need: that inheritance is involved, what the counselor does, that testing is a choice and that results may be uncertain.

Health Literacy, Disparities and Cultural Humility

Readable materials are not only a communication issue. Families with lower literacy, limited English or less education are also less likely to be referred for genetic services, so a brochure written at graduate level adds another barrier for the same groups. Tervalon and Murray-García (1998) described cultural humility as continual self-examination by the clinician and active work to even out the unequal power in the patient encounter. Writing in the professional's language assumes that the patient should adapt to the clinic; writing in the patient's language reverses that assumption. Next steps would include testing the brochure with patients, translating it with community reviewers rather than word for word and adding a picture of a family tree.

Conclusion

The revision lowered the estimated reading level from about grade 20 to about grade 5 while keeping the information patients need to decide whether to seek counseling. Clear writing is a small but concrete way to reduce the disparities this module examines.

References

Erby, L. H., Roter, D., Larson, S., & Cho, J. (2008). The rapid estimate of adult literacy in genetics (REAL-G): A means to assess literacy deficits in the context of genetics. American Journal of Medical Genetics Part A, 146A(2), 174-181. https://doi.org/10.1002/ajmg.a.32068

Flesch, R. (1948). A new readability yardstick. Journal of Applied Psychology, 32(3), 221-233. https://doi.org/10.1037/h0057532

Kutner, M., Greenberg, E., Jin, Y., & Paulsen, C. (2006). The health literacy of America's adults: Results from the 2003 National Assessment of Adult Literacy (NCES 2006-483). U.S. Department of Education, National Center for Education Statistics.

Tervalon, M., & Murray-García, J. (1998). Cultural humility versus cultural competence: A critical distinction in defining physician training outcomes in multicultural education. Journal of Health Care for the Poor and Underserved, 9(2), 117-125. https://doi.org/10.1353/hpu.2010.0233