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Bias In The Genetic Counseling Profession: Reimagining The Certification Exam

By Sarah Hopkins

Sarah Hopkins, MS, CGC works as a genetic counselor in a bleeding disorder clinic in NYC. She also works as a project coordinator for a COVID19 biobank. On Twitter @SarahGenetics

It has been observed for decades that genetic counseling is an overwhelmingly white profession. The profession has been sensitive to this, and organization leaders have endeavored to eliminate bias and reduce barriers to the field. In particular, it’s been recognized that the Board exam has biased questions. Unlike in nursing or medicine, however, we don’t know whether our Board pass rates vary by ethnicity because those data are not collected.

Standardized testing has disadvantaged people of color in numerous fields of testing since the early 1900s. Among the founders of standardized testing was Princeton psychologist and eugenicist Carl Brigham, who wrote that the SAT would help prove the superiority of the white race and prevent “the infiltration of white blood into the Negro.” Standardized tests helped place US soldiers in units segregated by race and test score. Test scores have repeatedly been shown to predict the test taker’s race and wealth, and not clinical competence. Civil rights lawsuits on behalf of people of color and students with disabilities have challenged the use of standardized testing in undergraduate and graduate admissions, as well as in certification in other professions.

Educational institutions have been dropping the tests, even more so during the pandemic. While Board certification is required by states that grant licensure, and most employers require it, that doesn’t mean the Boards must continue in their current form.

Genetic counselors have devoted years of practice analyses and committee work towards removing bias in Board questions, and yet ethnic stereotyping persists. Racism continues through unconscious and unquestioned assumptions. I just learned from an MTV video, of all places, that the term “Caucasian,” which we genetic counselors are among the last groups to use, is outdated and absurd. The Boards continue to be no more enlightened than I am. The exam I took featured a question with a Chinese American family silently refusing to discuss their shame surrounding a genetic condition.  Another question described an “East Indian family,” a eurocentric term best abandoned along with Caucasian. The East Indian couple features a husband making all the decisions while the wife sits silently. The only woman in the exam who has children with more than one partner is Hispanic. Inherited genetic conditions in the exam are “common in Jewish communities because of arranged marriages.” One question asks about the use of interpreters and assumes you, the genetic counselor, are fluent only in English, and not, say, Mandarin.

Many, if not most genetic counselors are concerned with the lack of diversity in the field, about inequity in recruitment, admission, curriculum, hiring and promotion. We podcast and blog about it, we tweet and post, we meet virtually and in person. But trying to eliminate bias in multiple choice exams ignores the original mistake of using these exams in the first place. We’re rearranging deck chairs on the Titanic.

Multiple choice tests do not lend themselves to the subtlety that is required in clinical practice. Patients don’t present with five choices. If we want to ensure graduates are ready to practice, then we should use open-ended questions. Internist and essayist Danielle Ofri recommends that physician recertification be open-book, and not timed. She argues that open-book tests would mimic real life, that in clinical practice, memorization of facts alone is insufficient. We look things up and consult colleagues. Relying solely on memory, she writes, amounts to malpractice.

Open-ended questions are also preferable to multiple choice because they easily allow for change. We’ll change our minds in one year, five years, ten years about which test to order, how we refer to an ethnic group, the way we approach a diagnosis. Multiple choice tests don’t allow the kind of nimble approach we need as our practice changes. When we cling to a multiple choice exam to confer certification on genetic counselors, we are putting ourselves at the mercy of the testing industry. We are not allowing for inevitable change in a field that changes more quickly than most.

Exam questions could be written by a required number of genetic counselors who are from underrepresented ethnic groups. The Boards could be graded by genetic counselors, using an agreed-upon rubric developed by experts in each area. Graders could be awarded continuing education credits for their work. Pass rates should be reported by ethnic groups, perhaps over a three-year period, to enhance anonymity.

The challenges we face with the pandemic, coupled with the imperative to address systemic racism provide an opening to imagine a new approach to certification. We should dispense with a testing method that has never served our profession well. Next stop: diversifying graduate admissions.

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