Kelly Michael L, Ackerman Paul D, Ross Lainie Friedman
Loyola University, Stritch School of Medicine, Maywood, IL, USA.
J Natl Med Assoc. 2005 Jun;97(6):777-83.
There is extensive documentation that minority adults are underrepresented in medical research, but there are scant data regarding minority children and their parents.
All full-length articles published in three general pediatric journals between July 2002 through June 2003 were collected and reviewed. Articles were excluded if they did not include at least one U.S. researcher, all subjects enrolled at U.S. institutions, parents or children as subjects, some prospective data collection, or between eight and 10,000 subjects. Corresponding authors were surveyed to clarify race/ethnicity data, language barriers and how race/ethnicity data were collected.
Two-hundred-twenty-eight articles qualified for further analysis. Black children and parents and Asian/Pacific Islander parents were overrepresented, and Hispanic children and parents were underrepresented compared to the Census data. Most researchers collected race/ethnicity data by having subjects self-report. Most studies did not have translation available, although most Hispanic and Asian/Pacific Islander subjects were enrolled in studies in which translation was available.
Our data show that Hispanic and Asian/Pacific Islander research subjects are more likely to participate in pediatric research when translation is available. If the goal is to ensure access to pediatric research for all ethnic populations, then more research needs to accommodate non-English-speaking participants.
有大量文献表明少数族裔成年人在医学研究中的代表性不足,但关于少数族裔儿童及其父母的数据却很少。
收集并审查了2002年7月至2003年6月期间在三本普通儿科期刊上发表的所有全文文章。如果文章不包括至少一名美国研究人员、所有在美国机构招募的受试者、以父母或儿童为受试者、一些前瞻性数据收集,或者受试者数量在8至10000人之间,则将其排除。对通讯作者进行了调查,以澄清种族/族裔数据、语言障碍以及种族/族裔数据的收集方式。
228篇文章符合进一步分析的条件。与人口普查数据相比,黑人儿童及其父母以及亚太岛民父母的代表性过高,而西班牙裔儿童及其父母的代表性不足。大多数研究人员通过让受试者自我报告来收集种族/族裔数据。大多数研究没有提供翻译服务,尽管大多数西班牙裔和亚太岛民受试者参加的研究提供了翻译服务。
我们的数据表明,当提供翻译服务时,西班牙裔和亚太岛民研究对象更有可能参与儿科研究。如果目标是确保所有族裔人群都能参与儿科研究,那么更多的研究需要考虑非英语参与者。