Browner C H, Preloran H Mabel, Casado Maria Christina, Bass Harold N, Walker Ann P
Center for Culture and Health, Department of Psychiatry and Biobehavioral Sciences, University of California--Los Angeles, CA, USA.
Soc Sci Med. 2003 May;56(9):1933-46. doi: 10.1016/s0277-9536(02)00214-9.
Amniocentesis, and other prenatal genetic tests, have become a well-established feature of modern prenatal care. But these tests place a considerable decision-making burden on the expectant mothers to whom they are offered: the genetic issues involved are complex and the appropriate course of action sometimes ambiguous. Genetic counseling aims to help pregnant clients make an informed decision about prenatal genetic tests. But the clientele of prenatal genetic counseling has changed significantly in the years since the practice was established. Clients were once a self-selected group of women well-informed about the genetic services being offered. In contrast, clients now include an increasing number of women, particularly ethnic minority women, who had no prior knowledge of genetic testing, but were found to be at risk of birth defects after routine screening. Little is known about how well genetic counseling serves the needs of this new clientele. This paper investigates the possibility that miscommunication between genetic counselors and their Mexican-origin clients contributed to the higher rates of amniocentesis refusal. We interviewed 156 pregnant Mexican-origin women who screened positive on a blood test routinely offered in California to detect birth defects. We also observed the genetics consultations of a sub-sample of the women. We identified five common sources of miscommunication: (1) Medical jargon; (2) The non-directive nature of counseling; (3) The inhibitions of counselors stemming from misplaced cultural sensitivity; (4) Problems of translation; (5) Problems of trust. We found that many Mexican-origin women are skeptical of genetic testing and do not easily surrender their own lay theories about the causes of their condition. In order to dislodge the misunderstandings of their clients, counselors must give clients the opportunity to air their own views, however contrary to those of genetics professionals these may be.
羊膜穿刺术以及其他产前基因检测，已成为现代产前护理中一项既定的特色项目。但这些检测给接受检测的准妈妈们带来了相当大的决策负担：其中涉及的基因问题复杂，而恰当的行动方案有时也不明确。遗传咨询旨在帮助怀孕的客户就产前基因检测做出明智的决定。但自产前遗传咨询业务开展以来，其客户群体已发生了显著变化。过去，客户是一群自行选择、对所提供的基因服务有充分了解的女性。相比之下，现在的客户包括越来越多的女性，尤其是少数族裔女性，她们之前对基因检测一无所知，但在常规筛查后被发现有出生缺陷的风险。对于遗传咨询在多大程度上满足了这一新客户群体的需求，人们知之甚少。本文探讨了遗传咨询师与其墨西哥裔客户之间的沟通不畅是否导致了羊膜穿刺术拒绝率较高的可能性。我们采访了156名墨西哥裔孕妇，她们在加利福尼亚州例行进行的一项检测出生缺陷的血液检测中呈阳性。我们还观察了其中一部分女性的基因咨询过程。我们确定了五个常见的沟通不畅来源：（1）医学术语；（2）咨询的非指导性性质；（3）咨询师因文化敏感度不当而产生的顾虑；（4）翻译问题；（5）信任问题。我们发现，许多墨西哥裔女性对基因检测持怀疑态度，不容易放弃她们自己关于自身状况成因的外行理论。为了消除客户的误解，咨询师必须给客户机会表达他们自己的观点，无论这些观点与基因专业人员的观点有多大差异。
