Discuss Diagnosis and Natural History

Summary

Providing genetic counseling to refugees presents unique challenges for diagnosing and managing genetic conditions. This case discusses the challenges that might present in genetic counseling a Somali family with fairly traditional beliefs and practices. Therefore, in this case, an interpreter was requested. However, it is not uncommon for a Somali man to refuse an interpreter, even if he is the only member of the family who can speak English. This conflict of wishes and needs presents a difficult dilemma for the genetic counselor who wants to be sure both parents are fully informed about the condition--especially the mother, who is the primary caretaker of the children.

When a genetic counselor's practice includes individuals who have come to the U.S. as refugees, the counselor should ask him/herself: What do I know about the socio-political situation of the client’s country of origin? Do I have enough background information to be able to help this family? Do I know why this family specifically sought refuge in the U.S.? Did they already have relatives in the U.S.? If so, how extensive are the family’s U.S. roots? It is important to realize that Somali refugees have been coming to the U.S. for several decades. Therefore, not all patients of Somalian background will be as “traditional” as the family in this case. Genetic counselors should assess the acculturation status of clients who are refugees. Because this family has only been in the U.S. for three months, is it reasonable to presume that they are most likely in the integration phase of acculturation? Might the various family members find themselves in a range of stages in the acculturation process? Who exactly are the family members in the room? Why did they come to this appointment? Sickle cell anemia is a serious disease with few "visible" features. What is the family's sense of Asad's health and his illness? Do they consider illnesses with visible features more or less burdensome than conditions that are visibly evident?

The focus of this case was on disease management. We used the mnemonic ETHNIC to help determine the family's preferences in managing Asad's condition. ETHNIC also elucidated the role of the family's Muslim faith in explaining the condition. In a real genetic counseling case, there would be other salient issues to be addressed, including recurrence risk, genetic testing of other family members, and prenatal diagnosis. If the counselor is successful in laying the groundwork of trust during the initial session, the family will continue to obtain care from genetics professionals in the future for ongoing treatment, discussion of preventative measures, and genetic counseling.

By design, this case discusses issues and challenges around refugees in a general way.  However, the status of immigrants, refugees and asylum seekers regularly changes. Genetic counselors can obtain current information from these websites or other sites listed on the Resources page of this case: 

US Department of State: https://www.state.gov/refugee-admissions

US Citizenship and Immigration Services: https://www.uscis.gov/

Human Rights Watch:  https://www.hrw.org/




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