A Genetic Counseling Cultural Competence Toolkit

Genetic Counselors' Cultural Competence Tips‏
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Genetic Counselors' Tips

Who is a relative?

Some Asian cultures look only at the surname (father's clan) when considering the question of consanguinity.  In other words if the couples' mothers are sisters they do not consider themselves related by blood.  I learned this both through my college roommate (who was Hmong) and in practice.

Contributed by: AP, MS, Genetic Counselor

I've noticed that in the Baltimore area Black women consider any brothers and sisters they have with the same mother to be a full sibling. So, you have to clarify that siblings have the same "mother and father" as the patient. I don't know if this is a general cultural perception or specific to the Baltimore area.

Contributed by Nisha Isaac, MS, CGC, Genetic Counselor, St. Joseph's Medical Center, Towson, MD

Use your local resources!

This is nothing profound or that hasn’t been said before, but it was probably the most helpful thing I did in my first position after graduate training where the majority of my clients were from a social and cultural demographic with which I had no prior experience.

The very experienced public health nurses who worked at the outreach clinic sites to which I traveled gave me numerous tips to help me communicate more effectively and be more culturally sensitive to my clients. These ranged from tips about eye contact (less direct eye contact is preferred), to how to position chairs during the session (not head on), to how not to ask certain questions in the pedigree (i.e. asking directly if “people were still living” or if someone “had passed away” were considered disrespectful; you could eventually ascertain the “status” through encouraging storytelling about the individual in question). They also pointed out things like “dressing down” a bit (not that I have ever been too fancy anyway) so as to still appear professional but to more closely match the casual dress of the clients and seem more “real” and “accessible” to them. I don’t think members of the community itself would have felt comfortable telling me these things as it may have seemed disrespectful of them to tell a professional how to act.

Contributed by Carol Walton, MS, CGC, Director, Graduate Program in Genetic Counseling, Denver, Colorado

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Let your office décor communicate cultural interest.

One genetic counselor mentioned that her office wall décor includes a map of the world. This counselor serves a very diverse clientele outside of Chicago, IL, including refugees to the US.  She uses the explicit presence of the map to “say” that “no matter where you and your family area from, you are welcome here.” The map also provides an opportunity for the counselor to say to the client, “I am not familiar with ….. your town. Perhaps you could show me where it is, and tell me more about it.”

Contributed by a Genetic Counselor working outside of Chicago, IL

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Always focus on the patient’s needs.

As a Jewish genetic counselor, my cultural training from being involved in the Jewish community and learning Jewish history has resulted in my personal stance to fight back against anti-semitism at all costs. My personal cultural identity makes me want to speak up and stop any anti-semitism to which I am exposed, and to teach away ignorance. Beginning with my very first patient at my first genetic counseling job, and in many subsequent patient encounters, however, I heard a multitude of anti-semitic comments. Especially when I asked whether my patients had any Jewish ancestry, patients would respond with comments such as, "well, my dad's side of the family is cheap, so maybe" or "I hope not" or "my grandfather 'looked' Jewish," etc...” My genetic counseling role is to focus on my patients and meeting their needs pertaining to their presenting indication, genetic concerns, building rapport, etc. I recognized that responding to anti-semitic comments, defending my community, and doing what I have always believed in doing personally would only detract from my ability to meet the patients' genetic counseling needs. So, while against my personal judgment and beliefs, I have chosen that the professional way in which to handle these situations is to restrain myself from reacting to these comments. In this way, I feel I have taken steps towards cultural competency (in this instance, to work effectively with the less educated community).

Contributed by a Genetic Counselor with experience working in Tennessee and Mississippi

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Determine the client’s priorities in decision making. Small town folk can make good big decisions.

When working in urban and rural settings in the same state, a genetic counselor may note general differences in the factors clients tend to consider when making decisions. What is the role of logic vs. letting things happen according to the rules of nature? To what extent is absolute risk important? Isn’t it most important to determine how the client defines the burden of risk? Think about the range of responses that you might encounter. If someone decides to make a decision based on the importance of “live and let live,” this might be perceived as “illogical” and the client might even be considered to be “dumb.” However, it’s important to determine the client’s priorities, no matter how different they might be from what you have previously encountered and/or how you would make this decision. Remember that there are no absolutes in what determines a good or a bad decision.

In addition to talking to your patients about their past experience in making decisions, and what they feel are the most important factors, it can be very helpful to speak to the physicians in the areas/regions in which you may receive referrals or hold clinics. Holding these meetings can help you gain insight into the general priorities of the patient population that you are likely to encounter, and it should also help you develop a pipeline for future referrals.

Contributed by: Andy Faucett, MS, CGC, Emory University School of Medicine, Atlanta, GA

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Who is the patient?

How often do you consider who is your patient? For purposes of billing, chart making and pedigree drawing in prenatal counseling, we often and perhaps routinely choose the pregnant woman as the “consultand.” However, be sure to step back and consider ‘who is your patient’ for counseling purposes. If you are a member of an underrepresented minority in genetic counseling, such as being a male genetic counselor, you may naturally have a “different” perspective on who is the patient. What about the “other” member of a “couple” or “other” family members? Aren’t they your patients, too? These individuals may have come to the genetic counseling session to support the pregnant woman, and also to learn, discuss, decide, consider bad news, develop a care plan, etc. If we see a couple, one of our goals should be to support their relationship and that may include treating the couple as our patient. One of the challenges of genetic counseling is working with the presenting dyadic, multi-person, and multi-generational dynamics.

Contributed by: Andy Faucett, MS, CGC, Emory University School of Medicine, Atlanta, GA

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How does cultural and linguistic competence touch you? Let’s count the ways!

At first blush I dismissed Nancy's request for 'cross-cultural' anecdotes as not applying to me. It has been 10 years since I have worked in a clinical setting and of course cross-cultural issues only applied when the person sitting across me looked or sounded different. In the past I had worked in the Haitian community in Miami and with embassy families from around the world here in the nation's capital. Those were my cross-cultural days!

However, within the last week I have been involved in conversations about:

  • A DVD developed with funding from the Western States Genetic Services Collaborative that uses storytelling to engage the Alaska Native Population in learning about newborn screening and CPT-1A;

  • The development of a parent brochure on the importance of genetic services following the detection of infant hearing loss, written at a low literacy level;

  • The dissemination of products from the MCHB/HRSA-funded Consumer Genetics Education Network (CGEN) Project (a March of Dimes coordinated initiative to improve genetic literacy in underserved populations and to increase access to culturally and linguistically appropriate genetics education programs and services, through which four community partners have developed and implemented population-specific genetics education programs.); and

  • The organization of a special satellite symposium to the 2010 ACMG Annual Meeting with tribal leaders and representatives of the Navajo (Diné) Nation who will address the controversies around genetic testing, services and research in the Native American community (attached below is our press release for this session, which I helped prepare).

And this was just one week!

My “aha” is obvious: Cultural competence is at least as vital when working behind the scenes or in the public health setting—and at times even more so, because of the scope of the impact of my actions—as it was in my clinical days.

Contributed by: Judith Benkendorf, MS, CGC, Special Assistant to the Executive Director, American College of Medical Genetics

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Contact Kathy Beal, MBA, ACMG Public Relations Director, 301-238-4582, Mobile 978-853-1810, kbeal@acmg.net

What is the Native American Perspective on Genetic Testing and Research?: Navajo Tribal Leaders to Meet with Medical Geneticists at American College of Medical Genetics Annual Conference in Albuquerque, New Mexico on March 24, 2010

Bethesda, MD – March 10, 2010-- Most American Indian governments have instituted a moratorium on genetic studies, and the controversy over genetics and newborn screening among Native Americans has complex roots. The American College of Medical Genetics (ACMG) will hold a special panel discussion with tribal leaders and representatives of the Navajo (Diné) Nation at the upcoming ACMG annual meeting in Albuquerque, New Mexico that will address the controversies around genetic testing, services and research in the Native American community.

The first forum of its kind to be held at a national medical genetics meeting, this panel discussion is designed to open up ongoing dialogue within the Navajo community and between the Navajo and the regional genetics community to a national conversation. Tribal leaders will present the complex historical roots of the Navajo’s views on genetic screening, testing and research. Family members will join them as they explore many perspectives on the ways the Navajo population stands to benefit from modern genetics.

“This national conversation is a critical first step for the Navajo and medical genetics communities to define common ground and foster partnerships to promote the Navajo People’s ability to benefit from modern genetic advances in public health, while remaining respectful of their world view and spiritual beliefs,” said Judith Benkendorf, MS, CGC, ACMG’s Special Assistant to the Executive Director and Co-Project Director of the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives.

In addition, a concurrent scientific session to be held from 1:00-3:00 PM on Thursday March 25, “Navajos and Genetic Disease: Genetic, Medical, and Educational Issues,” will provide an overview of the genetic diseases of the Navajo, a promising newborn screening program for SCID, and views on genetics and genetic education among the Navajo from both an “outsider” and an “insider.”

Where/When: The Genetics and Genetic Research – Native American Perspectives, two-hour session is sponsored by The Regional Genetic and Newborn Screening Service Collaboratives and their National Coordinating Center (www.nccrcg.org) and takes place between 7 and 9 PM at the Bravos/Galisteo/Aztec, Albuquerque Convention Center on Wednesday, March 24, 2010.

Registration: Pre-Registration is required. Complimentary Media registration is available at www.acmgmeeting.net; – use the registration code PRSS10.

Who: Panelists include Nanibaa' Garrison, PhD, Stanford Center for Biomedical Ethics; Johnson Dennison, Indian Health Service: Yolanda E. Sandoval-Nez, Native American Disability Law Center; Patricia Thomas, Family Voices; Robert Yazzie, Diné Policy Institute; and Beverly Becenti-Pigman, Navajo Division of Health.

* Acknowledgement: This session is sponsored by the HRSA Genetics Collaboratives and their National Coordinating Center. The National Coordinating Center for the Genetic and Newborn Screening Services Collaboratives is funded by U22MC03957, awarded as a cooperative agreement between the Maternal and Child Health Bureau/Health Resources and Services Administration, Genetic Services Branch, and the American College of Medical Genetics.

About the American College of Medical Genetics

Founded in 1991, the American College of Medical Genetics (www.acmg.net) advances the practice of medical genetics by providing education, resources and a voice for more than 1400 biochemical, clinical, cytogenetic, medical and molecular geneticists, genetic counselors and other healthcare professionals committed to the practice of medical genetics. ACMG’s activities include the development of laboratory and practice standards and guidelines, advocating for quality genetic services in healthcare and in public health, and promoting the development of methods to diagnose, treat and prevent genetic disease. Genetics in Medicine, published monthly, is the official ACMG peer-reviewed journal. ACMG’s website (www.acmg.net) offers a variety of resources including Policy Statements, Practice Guidelines, Educational Resources, and a Find a Geneticist tool. The educational and public health programs of the American College of Medical Genetics are dependent upon charitable gifts from corporations, foundations, and individuals. The American College of Medical Genetics Foundation (www.acmgfoundation.org) is a 501(c)(3) not-for-profit organization dedicated to funding the College’s diverse efforts to translate genes into health.

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Can you see it my way?

As the only Advanced Practice Nurse in Genetics in the state of Arkansas and Hispanic, trying to see the patient’s “worldview” had helped tremendously during my encounters. Also, publishing a book chapter Paniagua, C.T. & Taylor, R.E. (2009). Hispanic/Latino perspectives on genetic tests and ethics. In Monsen, R.B. (Ed.) Genetics and ethics in health care: New questions in the age of genomic health. Silver Spring, MD: Nursesbooks.org. ISBN-13: 9781558102637, Pub#: 9781558102637, and an article Paniagua, C.T. & Taylor, R.E. (2008). The Cultural Lens of Genomics. OJIN: The Online Journal of Issues in Nursing, 13(1).

Available at: The Online Journal of Issues in Nursing, Vol. 13 - 2008, No. 1 Jan. 08

Contributed by Dr. Carmen T. Paniagua, EdD, RN, MSN, CPC, APN, ACNP-BC, APNG, FAANP,
University of Arkansas for Medical Sciences, Little Rock, AR

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Silence is golden.

I have had the rich experience of working as a genetic counselor in New Mexico for the last four years. One thing I have learned from working with some of the Native American and other populations here is to cultivate comfort with silence. The dominant American conversational style can be uncomfortable or confusing for some clients. I found that the little “mm-hmms”, “uh-huhs” and immediate reflection that I thought communicated active listening and understanding, was in some cases perceived as interruption and rudeness. I still use empathic statements and reflection, but I try to slow my pace down, pause for longer periods after asking questions and before responding to patients, and allowing more silence when patients are emoting or upset. I've found that this improves my rapport and communication with clients across ethnic groups.

Contributed by Suzanna Schott, MS, LCGC, Center for Prenatal Development, Albuquerque, NM

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Identify your hot buttons.

The patient populations I have worked with in my two jobs since graduation are very different. It has been a very interesting transition for me b/c, being of Latin background, I was of course more comfortable with my Latino clients at my first position in Western Mass. I currently work in a cancer setting where I see mostly middle to upper class Caucasian families and it has taken time to get used to the change in culture, views and overall attitude here. Although it is sometimes difficult, the experience I have had with these clients is invaluable…not only in strengthening and diversifying my counseling skills, but also in fostering personal growth and introspection. By doing this, I am able to identify my own “buttons” and make sure I do not let them be pushed while in a session. Recognizing and, more importantly, setting aside, my own biases is a crucial part of professional growth and I feel that I can apply some of the lessons to my personal life as well.

Contributed by Mari Niell, MS, CGC, Hoag Hospital, Newport Beach, CA

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Tailor wording of questions to the patient’s cultural background.

We see some patients and couples of Caribbean or African descent. In their cultures, it seems to be very common for there to be many half-siblings from their mom or dad or both. So, when taking a pedigree, I usually ask, as matter-of-factly as possible, “How many brothers and sisters do you have with the same mom and dad as you?”, instead of just “How many brothers and sisters do you have?”. I then ask, “How many siblings with same mom, different dad,” and, “how many with same dad, different mom”. While this tip could apply to any patient, I find it particularly useful for the patients of Caribbean or African descent because my questions normalize the likely structure of their family. Also, I’ve noticed that, in this matriarchal culture, if I don’t ask the questions in this way the patients tend to mention only their siblings who share the same mother, and they will overlook their siblings who share only the same father.

Contributed by HD, a Genetic Counselor working in one of the most multicultural neighborhoods in North America

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Clients from some cultures label relatives or friends as ‘brothers or sisters’

For example, in some African cultures, it is common for someone to grow up in the same household as their cousins. They may refer to their cousins as their brothers or sisters, meaning taking family histories can get confusing.

Contributed by HD, a Genetic Counselor working in one of the most multicultural neighborhoods in North America

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Give newcomers a positive experience in the medical system.

In our prenatal genetics clinic, we see many recent immigrants who are probably having their first in-depth experience with our country’s medical system, since they are going through a pregnancy. Often they do not really understand how the medical system works and they do not feel they can easily ask their doctors who have a crowded patient schedule with very quick appointments. Genetic counseling may be one of their only opportunities to really be listened to, and have their questions answered. This may also be true for people born in our country, but I think it’s particularly true for recent immigrants who are likely facing challenges in most areas of their lives. A little extra patience with these patients can go a long way.

Contributed by HD, a Genetic Counselor working in one of the most multicultural neighborhoods in North America

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Be sensitive to the patient’s finances.

While it would probably not be a ‘big deal’ financially for us genetic counselors to take a half-day off work for an ultrasound or other procedure, we must remember that some of our patients work shifts or minimum wage jobs where they do not have vacation days or sick time. Taking a few hours off work could put them in a difficult place financially. This is especially true when they are going through an illness or a pregnancy because they may have many appointments. I try to remember this when patients are asking me to reschedule appointments – even though it can be frustrating, I try to accommodate them as best as I can!

Contributed by HD, a Genetic Counselor working in one of the most multicultural neighborhoods in North America

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The stigma of genetic conditions is real.

The most unique experience I have ever had as a genetic counselor was working with the Dor Yeshorim program in NYC. Rabbi Eckstein approached me in 1989 about adding CF to the panel of diseases screened for by his match program. I actually worked with a match maker from Brooklyn who explained to me that people with the CF gene put "a black mark in their family" (making family members less desirable as marriage candidates). I would meet potential matchees prior to their meeting a potential match because if the person was a CF carrier the match making could go no further. I would screen three or four potential matchees (per family) for our ultra Orthodox Jewish CF patients when they came to marriage age (18-22 for girls and mid 20's for boys). The most difficult case that I had was a young woman married to a CF patient who was sent for many infertility work-ups and was being blamed for not conceiving. Her husband and his family told her that he had asthma. His family did not want it to be known that he had CF because his siblings would be lesser valued in the match process. Obviously, men with CF are infertile yet they let this woman believe it was her fault and they had her endure the anguish and medical testing. I left NYC to move to Philadelphia so I don't know if the husband's family ever told the wife the truth about his illness. Obviously, I was sworn to secrecy by the confidentiality of my CF patient and his wishes but it was so hard to watch. Protecting the marriageability of the family members was of utmost importance.

Contributed by Kathleen D. Valverde, MS, CGC, Director, Genetic Counseling Program, Arcadia University, Glenside, PA

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Modify pedigree drawing standards and expectations as needed when working with immigrants.

This comment was directed to Nancy Warren after she gave a presentation on genetic counseling at the 2010 International Medical Interpreter’s (IMIA) meeting:  “I enjoyed your presentation at the IMIA.  My only feedback at this time relates to the "pedigree" chart you showed in your PowerPoint presentation.  I was trying to see that with the eyes of an immigrant couple who are, perhaps, the first generation of their families to live in the U.S.  It may be possible for them to provide information relating to their extended families. However, it is more likely that it will be very difficult for them to come up with much meaningful medical history to help in creating such a complete chart.  I'm sure you deal with this all the time, but since you didn't actually articulate what you do in such a case, it came across as being ... I almost hesitate to say ... part of "white privilege" to assume that such a complete chart is even possible and expected in all cases.  I'm only saying this because you seemed to really invite such feedback and earnestly want to reach out to more diverse communities.”

Contributed by Linda Pollack-Johnson, Medical Interpreter 

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Dress for Counseling Success

When meeting with a person with a cultural background different from your own, consider your physical appearance and body language. Certain gestures, actions and words may be offensive or distracting for people from a different culture. Examples:

  1. Avoid unknowingly “flaunting” your body. When we explain medical diagnoses or procedures, we often point to the relevant body part (Example: The genetic counselor often points to her own abdomen when explaining amniocentesis needle placement). Pointing in this manner may make some clients, especially males, uncomfortable.

  2.  Always maintain a professional appearance. Avoid revealing clothing that may make patients uncomfortable, such as low-cut blouses. Display cultural neutrality by avoiding wearing jewelry indicating your religious background (chain with a Christian cross, or a Star of David necklace).

  3.  Be aware of your body language. Female genetic counselors should sit with their knees together. Bring a clipboard for writing on so that you don't have to raise your leg as a prop for the medical chart or intake forms.

  4.  Be cautious about touching patients. This suggestion especially relates to working with pediatric patients. Americans frequently use rubbing the head (or gently tousling the hair) as a sign of affection, but there are some cultures where touching a child’s head is disrespectful. In Vietnamese culture, the head is considered sacred (www.cdc.gov ).

  5.  Use professional language when asking about consanguinity. If members of a couple reply that they ARE related, you'd probably regret giggling inappropriately during the inquiry.

Contributed by Martha Walker, MS, CGC, Cincinnati Children’s Hospital, Cincinnati, OH

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Effective interpreting increases patient/professional rapport

It is important to expect the interpreter to translate "word for word" what is being said by patient and professional. The conversation with the patient needs be always phrased in a very specific way to meet the patient's needs and to answer questions appropriately. The interpreter should use the exact wording of the conversation between patient and professional. The encounter will be enhanced to help the patient feel heard with sensitivity, validation, and recognition of their needs.

Louise W. Gane, MS, M.I.N.D. Institute, UC Davis Health System, Sacramento, CA

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