Essay Question:
Genetic counseling is a specialized healthcare field that focuses on the communication of genetic information to individuals and families who may be at risk for inherited genetic disorders. Genetic counselors work with patients to help them understand the potential risks and benefits of genetic testing, select and interpret their genetic test results, and provide guidance on incorporating this information into their care. In recent years, there has been a growing recognition of the importance of promoting diversity and inclusion within the field of genetic counseling. This is because individuals from diverse backgrounds may have unique healthcare needs and experiences that can impact their ability to access and benefit from genetic counseling services.
In this essay, we would like you to tell us: What qualities and skills do genetic counselors possess that would help to promote diversity and inclusion in the field and what impact would this have on patient care?
READ: 1ST PLACE | 2ND PLACE | 3RD PLACE
1ST PLACE ESSAY: Jaden Shah, Arizona
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The Power of Inclusivity: Advocates for Diversity in Genetic Counseling
Can you imagine a world where every individual, regardless of their race, receives the personalized healthcare that they deserve? As medical professionals embrace the power of inclusivity, genetic counselors must follow suit and arm themselves with the necessary skills to create a welcoming environment for all. Genetic counselors play a crucial role in providing professional recommendations to families at risk for inherited genetic disorders, and by embodying qualities such as empathy, cultural competence, communication skills, and a commitment to lifelong learning, they can promote diversity and inclusion within the field to ultimately enhance patient care.
Empathy stands as one of the most important qualities possessed by genetic counselors. According to a systematic review conducted by Frans Derksen and his team, empathy in patient-physician communication in general practice is of unquestionable importance (Derksen, et al. 1). Connecting with patients on a human level, listening to their concerns, validating their feelings, and supporting them throughout the counseling process are all essential components of empathy. USC News writer Maya Meinert reveals studies that have shown how truly understanding and comprehending the history and experiences of people of color is crucial for bridging the empathy gap (Meinert 1). By unlearning myths and frameworks that perpetuate racial biases, genetic counselors can develop a deeper understanding and provide more compassionate care. Furthermore, a study published in the Journal of General Internal Medicine revealed that 56% of physicians admitted they don’t have time for compassion, highlighting the significance of empathy in healthcare settings (Riess et al. 1). In the field of genetic counseling, empathy not only promotes diversity and inclusion but also has a uniquely positive impact on patient care. Having genuine care regardless of one’s background ensures that individuals receive the resources and assistance they need, enhancing overall patient outcomes.
Cultural competence is critical for genetic counselors to navigate the complexities of diverse backgrounds. By understanding cultural, social, and economic factors that influence a patient’s healthcare experience, including language barriers, cultural beliefs, and lack of trust in the healthcare system, genetic counselors can provide tailored care that aligns with their patient’s values and needs. Not to mention, having the ability to speak more than one language opens doors for more patients from diverse backgrounds to have access to resources from genetic counselors who understand their experiences and can effectively communicate with them (Shamsi et al. 1). As language barriers pose a significant challenge in healthcare, a systematic review highlighted that among patients who did not speak the local language, 49% had trouble understanding medical situations, 34.7% were confused about medication usage, 41.8% had trouble understanding medication labels, and 15.8% experienced adverse reactions due to healthcare misunderstandings (Shamsi et al. 1). When genetic counselors are culturally competent and proficient in multiple languages, they create an environment where patients feel more comfortable and confident in expressing their concerns and understanding the genetic information provided. This enhances patient engagement and facilitates a more collaborative decision-making process. Additionally, patients who can communicate in their preferred language are more likely to fully comprehend the recommendations, potential risks, and benefits of genetic testing, leading to improved patient outcomes. Being able to communicate effectively in a patient’s native language not only facilitates clear information exchange but also fosters a deeper connection and understanding between the counselor and the patient. By having the knowledge to be culturally competent and proficient in multiple languages, genetic counselors are able to bridge these communication gaps and ensure equitable access to genetic counseling services, thereby promoting diversity, inclusion, and effective patient care.
Just as how it is important to promote DEI in genetic counseling by incorporating more physicians who can communicate in more than one language, these individuals must also know how to not only be confident in the guidance they provide but also be able to deconstruct complex concepts within genetic counseling to communicate clearly with patients. The definition of genetic counseling emphasizes its role as a communication process that helps individuals and families comprehend medical facts, including diagnosis, the course of disorders, and available treatment options (“Genetic Counseling – An Evolving Field”). Improved communication skills contribute to promoting diversity and inclusion within genetic counseling by accommodating patients’ unique needs and ensuring equitable access to information. Through using nonverbal communication and active listening techniques to effectively communicate information, genetic counselors build rapport and establish trust to empower patients in making informed decisions about their future.
A genuine commitment to lifelong learning and professional development is crucial for genetic counselors. A study from Doximity highlights that 95% of physicians express interest in learning about new trials, treatments, or procedures, but 7 out of 10 feel overwhelmed by the amount of information (Burky 1). Genetic counselors who stay updated with the latest research and guidelines can bridge this knowledge gap, ensuring that they provide accurate and up-to-date information to patients from all backgrounds. By actively seeking out diverse perspectives and staying informed about advancements, genetic counselors can better address the specific genetic concerns tailored to each individual case. Ensuring that healthcare approaches and interventions consider the unique needs and experiences of individuals from diverse backgrounds, genetic counselors have a vital role to play in shaping a healthcare landscape that is equitable, informed, and patient-centered.
Genetic counselors have a responsibility to address the unique needs of each patient and provide optimal care. By persisting in their commitment to lifelong learning, genetic counselors can navigate the overwhelming amounts of medical information and ensure that patients from all backgrounds receive the care they deserve. Thus, it is essential to possess qualities and skills that promote diversity and inclusion within the field, leading to improved patient care. Through empathy, cultural competence, effective communication skills, and a commitment to lifelong learning, genetic counselors establish a foundation for inclusivity, ensuring that patients from all backgrounds receive the care they deserve. By remaining focused on promoting diversity and inclusion and meeting the unique needs of each patient, genetic counselors play a vital role in shaping a healthcare system that leaves no one behind.
Citations:
Al Shamsi, Hilal, et al. “Implications of Language Barriers for Healthcare: A Systematic Review.” Oman Medical Journal, 30 Apr. 2020, www.ncbi.nlm.nih.gov/pmc/articles/PMC7201401/#:~:text=Other%20studies%20found
%20that%20among,a%20problem%20understanding%20their%20healthcare.
Burky, Annie. “Physicians Overwhelmed by the Amount of Reading Needed to Stay Current with Clinical Advancements, Study Finds.” Fierce Healthcare, 25 Oct. 2022, www.fiercehealthcare.com/providers/study-doximity-survey-found-physicians-overwhel med-amount-reading-needed-stay-date.
Derksen, Frans, et al. “Effectiveness of Empathy in General Practice: A Systematic Review.” The British Journal of General Practice : The Journal of the Royal College of General Practitioners, Jan. 2013, www.ncbi.nlm.nih.gov/pmc/articles/PMC3529296/.
“Genetic Counseling – an Evolving Field.” An Evolving Field – Social, Counselors, and Risk – JRank Articles,
medicine.jrank.org/pages/2295/Genetic-Counseling-An-Evolving-Field.html#:~:text=Gen etic%20counseling%20is%20currently%20defined,disorder%2C%20and%20available%2 0treatment%20options. Accessed 25 May 2023.
Meinert, Maya. “How ‘empathy gap’ among social workers can affect services for people of color.” USC News, 18 July 2018,
news.usc.edu/143746/how-an-empathy-gap-can-affect-services-for-people-of-color/.
Riess, Helen, et al. “Empathy Training for Resident Physicians: A Randomized Controlled Trial of a Neuroscience-Informed Curriculum.” Journal of General Internal Medicine, Oct.
2012,
www.ncbi.nlm.nih.gov/pmc/articles/PMC3445669/#:~:text=At%20baseline%2C%2056% 25%20said%20they,found%20it%20interesting%20and%20helpful.
2ND PLACE ESSAY: Aahana Paul, Colorado
From hair to appearance to even some personality traits, there is one thing responsible for determining it all; our DNA. Our DNA possesses who one is at their very core, an intimate yet intricate instruction manual to every fiber in one’s body. Because this genetic code is such an integral part of humanity, it is of utmost importance that the use and analysis of it is done by professionals who exemplify the compassion and skill to deal with the delicate science that is genetics. Those professionals are known as genetic counselors. Genetic counselors use their knowledge and various skill sets to implement essential practices into the lives of individuals across many demographic groups. However, there is still an abundant discrepancy within the field of genetic counseling in terms of diversity and inclusion.
In terms of racial and socioeconomic status, it is observed that those of Hispanic and African descent have an extremely disproportionate representation within the genetic counseling field. [1] African Americans account for about 12.7% of the United States population, but only 1% of the National Society of Genetic Counselors’ membership identifies as African American. [2]
This discrepancy is further observed not only ethnically and racially, but also through gender. In fact, 95% of genetic counselors are female, a factor that could deter males interested in the field. From the perspective of genetic counseling student Ryan Hartman, being a male in the field is intimidating. He says that stereotypes are one of the biggest deterring factors, but also noted, “I don’t want to see males shy away from it because of stereotypes or numbers.” He furthered this hope by explaining that through outreach efforts, education, and reduction of stigma, inclusion for all genders in the field could be tangible. [3]
In terms of socioeconomic status, a gap is seen largely with the clientele demographic. In a study done by Hindawi, it was observed that while patients of a lower socioeconomic class had more predisposed genetic problems such as certain types of cancer, financial barriers cause this demographic to be one of the least frequent to visit genetic counseling companies. [4]
Having this lack of diversity within genetic counseling poses a threat to not only the integrity of the institution, but also to the patients most susceptible to genetic ailments. Without representation, there will be a continual stigma surrounding the field that may hinder accessibility further. Upon this, individuals from ethnic minority groups are unlikely to use these services due to lack of awareness, limited access, social and economic factors, and distrust of genetic information use. [5]
Nevertheless, there are things that genetic counselors can do to eliminate this discrepancy. One such thing is the usage of their platforms to better educate youth about matters of genetic counseling. A large reason that diversity is lacking in the first place is because of a lack of education surrounding the field. A cross-sectional study done regarding race in genetics found that of the 65% of students who indicated interest in genetic counseling, fewer African Americans (50%) than Caucasians (74%) had heard of genetic counseling (p ≤ .001). [3] This lack of comprehensive education about varying fields in the healthcare community translates to a lack of inclusion in the field as disadvantaged communities are less likely to be aware of unique occupations and how to acquire them. [5]
If genetic counselors used their knowledge of the field and communication skills to better educate local communities on the work that they do through grassroots efforts, an increase is expected among racial/ethnic minority applicants to genetic counseling training programs. [6] This can be achieved through “professional policy for internal and external affairs, outreach education, recruitment, training, mentoring, service delivery, and career advancement.” [7]
Using these tools to improve diversity and inclusion not only reaps benefits within the field, but also for genetic counseling patients. Research has shown that if patients from a certain background see representations of themselves within the healthcare workforce, they are more likely to trust their counselor, communicate their condition through language barriers, more likely to understand and follow their prescribed treatment, and more satisfied with their consultation. [8]
Through the introduction of a more diverse genetic counseling front, there is more room for cultural competency and the fostering of lasting relationships between the providers and patients.
[9] Upon this, because different ethnicities encounter different genetic patterns, having diverse counselors who are familiar with those determinants and implications could allow for a better understanding between patients and care providers and a better position to address inequity. [10, 12]This enables them to offer more empathetic and patient-centered care, which is integral when encountering diseases that disproportionately affect certain populations. [11] By recognizing and actively working to reduce health disparities, genetic counselors can create a more justiciable healthcare system. [12]
The impact of broadening diversity and inclusion within the field of genetic counseling has the potential of being monumental and beneficial to individuals across the nation. Genetic counselors have the platform and education to implement policies and strategies that can educate a large amount of diverse youth on the field to better include varying demographics. This implementation of grassroots efforts to recruit genetic counseling candidates fosters an environment of inclusion and newfound awareness, leading to overall greater diversity. The cultural competency that comes from diversity within genetics allows providers to foster an environment that can tailor treatment and relations specifically to the diverse needs of the different families present. Not only will patients feel more comfortable in the environment, but increased clientele diversity will be translated to more accessibility among susceptible peoples.The process of transitioning our genetic healthcare scheme to one that is more inclusive and diverse is by no means seamless, but is essential in ensuring an equitable future for all and a status quo of development and progress.
Citations:
[1] Erica Price, Steven J. Robbins, Kathleen Valverde, Increasing diversity in the genetic counseling profession: Development of recruitment tools for African American undergraduate students, Journal of Genetic Counseling, 10.1002/jgc4.1280, 29, 2, (224-233), (2020)
[2] Schneider, Kami. A Cross Sectional Study Exploring Factors … – Wiley Online Library, onlinelibrary.wiley.com/doi/full/10.1007/s10897-009-9242-z. Accessed 25 May 2023
[3] Hartman, Ryan. “Male Perspective: The 5%.” GENETIC COUNSELING PROGRAM, 28 Sept. 2020,
hhs.uncg.edu/genetic-counseling-program/student-perspective/male-perspective/#:~:text=The%2 0stark%20fact%20is%20that,%25%20female%20and%205%25%20male.
[4] Dusic, EJ. “Socioeconomic Status and Interest in Pursuing Genetic Testing for Hereditary Cancer in a US Based Population.” Scholarly Publishing Services – UW Libraries, 1 Jan. 1970, digital.lib.washington.edu/researchworks/handle/1773/48106.
[5] Director, Sarah Nadeau Associate, et al. “African Americans Face Systematic Obstacles to Getting Good Jobs.” Center for American Progress, 25 Apr. 2022, www.americanprogress.org/article/african-americans-face-systematic-obstacles-getting-good-job s/
[6] Udeni Salmon, Strategies to Address Gendered Racism in Science Research Careers: a Scoping Review, Journal for STEM Education Research, 10.1007/s41979-022-00079-1, 5, 3, (344-379), (2022).
[7] Mittman, Illana. Diversity in Genetic Counseling: Past, Present and Future, onlinelibrary.wiley.com/doi/full/10.1007/s10897-008-9160-5. Accessed 25 May 2023
[8] Jordan, Alyssa. “Importance of Diversity in Healthcare & How to Promote It.” Provo College, 28 July 2022, www.provocollege.edu/blog/the-importance-of-diversity-in-healthcare-how-to-promote-it/.
[9] Bennett, R. L., French, K. S., Resta, R. G., & Doyle, D. L. (2018). Standardized Human Pedigree Nomenclature: Update and Assessment of the Recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling, 27(3), 683–694.
[10] Annie K. Bao, Amanda L. Bergner, Gayun Chan‐Smutko, Janelle Villiers, Reflections on diversity, equity, and inclusion in genetic counseling education, Journal of Genetic Counseling, 10.1002/jgc4.1242, 29, 2, (315-323), (2020)
[11] Saulsberry, Kalyn, and Sharon F Terry. “The need to build trust: a perspective on disparities in genetic testing.” Genetic testing and molecular biomarkers vol. 17,9 (2013): 647-8. doi:10.1089/gtmb.2013.1548
[12] Bittles, A. H., & Black, M. L. (2010). Global Patterns & Tables of Inherited Disorders & Deleterious Genes. In Consanguinity in Context (pp. 35–65). Cambridge University Press
3RD PLACE ESSAY: Mary Balid, New York
DNA. Perhaps the most famous three letter acronym in existence, DNA makes up genes, or units of heredity that effectively determine who we are. From hair color to bone density, blood type to disease susceptibility, genes regulate trait inheritance and are consequently crucial in deepening our understanding of our health. The task of relaying genetic information falls to specialized experts called genetic counselors, who play an intricately intimate role in the development of human life. Though not physically involved in reproduction, genetic counselors provide a wealth of information and support vital to the wellbeing of individuals and families — a role especially important in our ever diversifying world. This information helps people to better understand their health in the context of their heredity, allowing them to make more well-informed decisions.
To properly understand the role genetic counselors play, it is first important to note the current landscape of genetics and to understand the diverse demographics that inhabit its terrain. Over the last few decades, the field of genetics has become an increasingly visible field of scientific study. As new technologies continue to become accessible to the public, the field only continues to increase in its ability to cater to the average individual. One well-known example of such a technology is in vitro fertilization (IVF), which is known for its role in assisted reproduction. By allowing mature eggs to be fertilized by sperm cells in laboratories, IVF effectively allows for viable pregnancies in otherwise unviable circumstances [1]. This ability of genetic technology –– to find genetic risks and, for some, provide alternative solutions –– has created a large demand for qualified professionals able to aid a variety of patients with diverse genetic needs. Recent data only further proves this claim; according to the U.S. Department of Labor’s Bureau of Labor, the number of genetic counselors is expected to increase by 18% between 2021 and 2031 [2].
Recognizing the genetic diversity among populations, especially in regard to inherited diseases, is an important quality that genetic counselors possess. For example, sickle cell disease, a disorder caused by two faulty hemoglobin genes, affects African-Americans at an exponentially larger rate than it affects Hispanic-Americans, (1/135 vs. 1/16,300, respectively) [3]. This is largely because SCD is a favorable evolutionary trait; Africans reside in regions where malaria is prevalent, and the sickle shape of blood cells confers resistance against the disease. Additionally, Tay-Sachs disease, a genetic disorder caused by mutations in both alleles of a gene (HEXA) on chromosome 15, disproportionately affects people of Ashkenazi Jewish and French Canadian descent [4]. Both are genetic diseases that predominantly affect specific ethnic groups. By recognizing racial and ethnic differences in diseases, understanding their implications, and informing patients thoroughly, genetic counselors create an environment where diversity is actively seen and promoted.
Genetic counselors are also mindful of cultural differences between various ethnic groups, such as their approaches and responses to medicine. Many individuals of African and Asian descent, for instance, strongly believe in both traditional medical practices (i.e. herbalism, fasting) and western medical practices. This is because, in many areas, traditional medicine continues to be the most prominent medical system available. For such individuals, traditional medicinal practices are simply integral to their identity and worldview; though it may not currently be the most dominant medical system, it provides what conventional medicine cannot: familiarity and trust. Genetic counselors not only recognize the existence of such beliefs, but also understand the influence of culture on attitudes toward westernized medicine. By doing so, genetic counselors provide a space where individuals can freely express their concerns about the foreign realm of genetic testing and treatment. In this way, genetic counselors innately promote inclusion and diversity –– they encourage and work with cultural beliefs, all without prejudice or judgment.
Perhaps most of all, genetic counselors are counselors. At their fundamental core, they are scientific professionals who specialize in empathy — individuals capable of emotionally helping patients navigate the complex world of genetics. They respond to patients with directness and care, encourage a variety of viewpoints, and attentively listen without bias. Though their scientific background allows them to plainly deliver critical genetic information, their empathy allows them to better care for their patients by guiding them to the best decisions in the context of their worldviews and personalities. This combination of science and empathy, which allows the counselors to deeply connect with their patients, is foundational to the profession and cultivates an inclusive culture in the genetic counseling field.
Because of these skills and qualities, patient care in genetic counseling has become a question of “How?” and not a question of “When?”. It is not, When will they understand my background? Or When will I find someone who can help me? but rather, How can testing or treatment be used in tandem with my beliefs? and How can we work together to bring about the best outcome? Indeed, rather than simply walk through generic courses of action, genetic counselors work personally and directly to each patient. They explain risks of inherited disorders in individualized manners, and truly take into account cultural, medical, and familial considerations.
Simply by nature of their profession alone, genetic counselors therefore possess qualities that are inherently inclusive. In fact, it could be said that genetic counselors provide the qualities necessary to truly and finally democratize patient care. And that has made all the difference.
Citations:
[1] Mayo Foundation for Medical Education and Research. (2021, September 10). In vitro fertilization (IVF). Mayo Clinic.
https://www.mayoclinic.org/tests-procedures/in-vitro-fertilization/about/pac-20384716
[2] U.S. Bureau of Labor Statistics. (2022, December 15). Genetic counselors : Occupational outlook handbook. U.S. Bureau of Labor Statistics. https://www.bls.gov/ooh/healthcare/genetic-counselors.htm
[3] Centers for Disease Control and Prevention. (2022, May 2). Data & Statistics on Sickle Cell Disease. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/sicklecell/data.html
[4] Cleveland Clinic Medical. (n.d.). Tay-Sachs Disease: Symptoms, Cause, Treatment. Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/14348-tay-sachs-disease
