Framing Genomics, Public Health Research and Policy: Points to Consider

被引:23
作者
Knoppers, B. M. [1 ]
Leroux, T. [2 ]
Doucet, H. [3 ]
Godard, B. [3 ]
Laberge, C. [5 ]
Stanton-Jean, M. [2 ]
Fortin, S. [2 ]
Cousineau, J. [2 ]
Monardes, C. [2 ]
Girard, N. [2 ]
Levesque, L. [3 ]
Durand, C. [3 ]
Farmer, Y. [4 ]
Dion-Labrie, M. [4 ]
Bouthillier, M. -E. [4 ]
Avard, D.
机构
[1] McGill Univ, Ctr Genom & Policy, Fac Med, Dept Human Genet, Montreal, PQ H3A 1A4, Canada
[2] Univ Montreal, Ctr Rech Droit Publ, Montreal, PQ, Canada
[3] Univ Montreal, Programmes Bioeth, Montreal, PQ, Canada
[4] Univ Montreal, Grp Rech Eth Biomed, Montreal, PQ, Canada
[5] Univ Laval, Ste Foy, PQ, Canada
关键词
Access; Genomics research; Governance; Privacy; Public health; Public participation; Stakeholder perceptions; State powers; POPULATION HEALTH; CHALLENGES; GENETICS;
D O I
10.1159/000279624
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
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. Copyright (C) 2010 S. Karger AG, Basel
引用
收藏
页码:224 / 234
页数:11
相关论文
共 47 条
  • [1] *AC MED SCI PERS D, 2006, US HLTH INF MED RES
  • [2] [Anonymous], 1980, GUID PROT PRIV TRANS
  • [3] [Anonymous], 2000, World Health Report 2000: Health Systems: Improving Performance
  • [4] [Anonymous], 2008, GENEDIT
  • [5] Beskow L.M., 2001, Community Genet, V4, P2, DOI 10.1159/000051150
  • [6] The impact of genetics and genomics on public health
    Brand, Angela
    Brand, Helmut
    den Baeumen, Tobias Schulte
    [J]. EUROPEAN JOURNAL OF HUMAN GENETICS, 2008, 16 (01) : 5 - 13
  • [7] Biobanking for epidemiological research and public health
    Brand, Angela M.
    Probst-Hensch, Nicole M.
    [J]. PATHOBIOLOGY, 2007, 74 (04) : 227 - 238
  • [8] The path from genome-based research to population health: Development of an international public health genomics network
    Burke, Wylie
    Khoury, Muin J.
    Stewart, Alison
    Zimmern, Ronald L.
    [J]. GENETICS IN MEDICINE, 2006, 8 (07) : 451 - 458
  • [9] *CAMPB COMM, 2006, FIN REP GOV ONT
  • [10] The case for a US prospective cohort study of genes and environment
    Collins, FS
    [J]. NATURE, 2004, 429 (6990) : 475 - 477