Pharmacogenomics Research Involving Racial Classification: Qualitative Research Findings on Researchers’ Views, Perceptions and Attitudes Towards Socioethical Responsibilities
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Notice bibliographique
Résumé
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. OBJECTIVES: 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. CONCLUSION: 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.
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Prédiction distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,028 | 0,002 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,002 | 0,003 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,001 | 0,001 |
| Intégrité de la recherche | 0,000 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découle