Pharmacogenomics research involving racial classification: qualitative research findings on researchers' views, perceptions and attitudes towards socioethical responsibilities.
BACKGROUND
Racial classification of study samples has been a common practice since the early days of pharmacogenomics research. The use of race as an axis of stratification in the study of human genetic variation and population differences in drug response has come under intense scrutiny recently, particularly among policy makers, clinicians and researchers. However, there are no published empirical data on how genomics scientists perceive ethical concerns or view their own professional roles when they are confronted with this issue in their everyday practice or have to decide themselves whether racial classification should be a cornerstone of their research work.


OBJECTIVE
To investigate the views and perceptions of researchers on the use of racial classification in pharmacogenomics research using a qualitative research methodology.


METHODS
We interviewed genomics researchers about their perceptions on pharmacogenomics, race and science, population-based genomics research and the attendant implications for their professional duties. We sought out researchers who self-identified with many of the populations likely to be solicited for race-specific pharmacogenomics research. A thematic investigation of the semistructured interviews was undertaken using the qualitative data software program ATLAS.ti to extract and systematically analyze complex phenomena (e.g., professional viewpoints) embedded in the narratives from the interviews.


RESULTS
The participants expressed the 'doubled-edged' nature of pharmacogenomics research involving racial classification while also having a cautiously optimistic view of race-based therapeutics. They believed that pharmacogenomics could improve health outcomes for racially defined populations in the context of health disparities. Sensitized to racism and potential abuses, they expressed concerns and need for precautionary measures over the sensitive nature of racially categorized research results. On the other hand, researchers perceived themselves as being responsible primarily for providing raw scientific data.


CONCLUSIONS
Researchers engaged in genomics investigations appear to display a guarded and yet favorable perception on the utility of race in pharmacogenomics investigations. Interestingly, researchers remain sceptical of their own roles vis-à-vis ethics and delegating socioethical responsibilities to ethicists was seen as a way to remedy this shortfall instead of broadening the scope of self-governance in scientific practice to socioethical issues. While these data do not necessarily reflect views and attitudes of all scientists, future science policy questions on how best to integrate molecular genetics with race-based therapeutics and incorporation of socioethical reflection in daily practice of genomics research need to consider the perceptions of scientists and similar 'upstream control points' in the process of knowledge generation and dissemination.
Egalité
Nathalie
N
University of Montreal, Bioethics Programs, Department of Preventive and Social Medicine, Faculty of Medicine, CP 6128, succ. centre-ville, Montreal, Québec, H3C 3J7, Canada.
Ozdemir
Vural
V
Godard
Béatrice
B
D001290:Attitude; D003433:Crosses, Genetic; D014644:Genetic Variation; D006801:Humans; D018579:Patient Selection; D010465:Perception; D010597:Pharmacogenetics / Q000639:trends*; D011792:Quebec; D044469:Racial Groups / Q000235:genetics*; D012106:Research / Q000639:trends; D012941:Social Responsibility