Chattopadhyay Sreeparna
Brown University, Box 1921, Providence, RI 02912, USA.
Soc Sci Med. 2006 Nov;63(10):2661-73. doi: 10.1016/j.socscimed.2006.06.031. Epub 2006 Aug 9.
Thalassemia is an inherited blood disorder that has been receiving increasing attention in India. However, prevention of thalassemia in India continues to be difficult despite efforts of public health professionals and the government. Using West Bengal as a case study, this paper attempts to unravel some of the barriers to the prevention campaign and the consequent under utilization of the program. Lack of access, low awareness, low-risk perception and poverty are all important proximate constraints; however, one of the greatest barriers to the program is rooted in cultural notions of blood, marriage, identity, personhood and kinship in Bengali society. Blood is so deeply valued in the Bengali kinship system that this genetic mutation is perceived to be corrupting the blood (rakter dosh). Being a thalassemia carrier (i.e., having thalassemia minor) renders an individual unfit as a suitable marriage partner because of beliefs related to purity of blood, its association with the continuity of the lineage, and subsequent transmission of desirable traits to future generations. The risk of non-marriage affects women disproportionately, and parents are not inclined to test their daughters because of the possibility of not being able to marry them off to eligible suitors. The stigma associated with having thalassemia minor (TMI) is a deterrent to the disclosure of thalassemia status as well as to testing. Using anthropological theories and ethnographic methods, this paper focuses on the gendered process by which the diagnosis of a thalassemia carrier 'spoils' identities, thereby creating a disjuncture between the goals of the prevention program and people's need for social conformity, and ultimately between medical desirability and social desirability. The paper also suggests policies for enhancing the utilization of the program. Finally the conclusions from this study have potential applications for public health prevention programs that confront problems of stigma in program acceptability.
地中海贫血是一种遗传性血液疾病，在印度受到越来越多的关注。然而，尽管公共卫生专业人员和政府做出了努力，但在印度预防地中海贫血仍然困难重重。本文以西孟加拉邦为例，试图揭示预防运动的一些障碍以及该项目因此未得到充分利用的情况。缺乏可及性、意识淡薄、低风险认知和贫困都是重要的直接制约因素；然而，该项目最大的障碍之一源于孟加拉社会中关于血液、婚姻、身份、人格和亲属关系的文化观念。在孟加拉亲属制度中，血液被高度重视，以至于这种基因突变被视为血液的腐败（rakter dosh）。由于与血液纯度、其与家族延续的关联以及随后将理想特征传递给后代的相关信念，成为地中海贫血携带者（即患有轻度地中海贫血）会使一个人不适合作为合适的婚姻伴侣。不结婚的风险对女性的影响尤为严重，而且由于可能无法将女儿嫁给合适的求婚者，父母不愿意让女儿接受检测。与患有轻度地中海贫血（TMI）相关的耻辱感既阻碍了地中海贫血状况的披露，也阻碍了检测。本文运用人类学理论和人种志方法，关注地中海贫血携带者的诊断如何“破坏”身份认同这一性别化过程，并由此在预防项目目标与人们对社会一致性的需求之间，最终在医学上的可取性与社会上的可取性之间造成脱节。本文还提出了提高该项目利用率的政策建议。最后，本研究的结论对那些在项目可接受性方面面临耻辱感问题的公共卫生预防项目具有潜在的应用价值。
