Framing genomics, public health research and policy: points to consider.
Genetic information can be used to target interventions that improve health and prevent disease. Indeed, the results of population genomics research could be useful for public health and national pandemic plans. Yet, firm scientific evidence originating from such research and the indicators of the role of health determinants, gene-gene and gene-environment interaction remain to be assessed and validated before being integrated into pandemic plans or public health programmes. It is not clear what is the role of the State in research on the elucidation of the determinants of gene-gene and gene-environment interactions and how, when, and if such data can be accessed and used for such planning. Over a period of 3 years, we sought to address these questions by gathering data and literature relevant to research in public health genomics, preparing issues papers and, finally, consulting with stakeholders on a provisional 'points to consider' document at various times. Examining in turn the issues of privacy, State powers, stakeholder perceptions, and public participation, we propose in this article, for each of these themes, a series of recommendations aiming to provide guidance on the role of the State in the use of genomic information for public health research, prevention and planning.
Knoppers
Bartha Maria
BM
Centre of Genomics and Policy, Department of Human Genetics, McGill University, Montreal, Qué., Canada. bartha.knoppers@mcgill.ca
Leroux
T
T
Doucet
H
H
Godard
B
B
Laberge
C
C
Stanton-Jean
M
M
Fortin
S
S
Cousineau
J
J
Monardes
C
C
Girard
N
N
Levesque
L
L
Durand
C
C
Farmer
Y
Y
Dion-Labrie
M
M
Bouthillier
M-E
ME
Avard
D
D
D001675:Bioethics; D002170:Canada; D030541:Databases, Genetic; D023281:Genomics / Q000941:ethics* / Q000639:trends*; D006285:Health Planning / Q000379:methods; D006291:Health Policy; D006293:Health Promotion / Q000379:methods; D006801:Humans; D010358:Patient Participation; D010465:Perception; D011634:Public Health; D011792:Quebec; D012040:Regional Health Planning