Giving samples or “getting checked”: measuring conflation of observational biospecimen research and clinical care in Latino communities

BMC Medical Ethics

Rachel M. Ceballos¹  Sarah Knerr¹ 

[1] Fred Hutchinson Cancer Research Center, 1100 Fairview Ave. N., M3-B232, Seattle 98109, WA, USA

关键词: Biospecimen donation;    Measure construction;    Psychometrics;    Diagnostic misconception;    Hispanic/Latino;   

Others  :  1221113
DOI  :  10.1186/s12910-015-0041-9

 received in 2015-04-01, accepted in 2015-07-07,  发布年份 2015

【 摘 要 】

Background

Expectations of receiving personal health information as a fringe benefit of biospecimen donation—termed diagnostic misconception—are increasingly documented. We developed an instrument measuring conflation of observational biospecimen-based research and clinical care for use with Latino communities, who may be particularly affected by diagnostic misconception due to limited health care access.

Methods

The instrument was developed using prior qualitative research, revised through cognitive interviewing and expert review, and field tested in a convenience sample of 150 Latino adults in Eastern Washington State. It was further refined through exploratory factor analysis and validated against existing measures of genetic knowledge and researcher trust.

Results

The final instrument demonstrated high internal consistency, evidence of content and construct validity, and no floor and ceiling effects. Individuals who were unemployed, spoke only Spanish, had no health insurance, received health care outside of traditional venues, and had good self-rated health received higher scores, indicating greater conflation of biospecimen-based research and clinical care.

Conclusions

The ability to systematically measure beliefs related to diagnostic misconception will help facilitate ethically-informed efforts to recruit Latinos into biospecimen-based research studies.

【 授权许可】

   
2015 Knerr and Ceballos.

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