Fondation Brocher | Karen Birmingham

L’utilité de ce genre d’institutions est incontestable. Car le monde moderne est sans cesse confronté à des innovations, médicales ou autres, qui s’appliquent à l’homme ou à son environnement proche. Ce lieu est donc nécessaire pour préparer la matière intellectuelle qui sera ensuite transférée aux citoyens afin que ceux- ci puissent se prononcer quant à la légitimité de ces innovations.

Professeur Axel Kahn, le célèbre généticien français, lors de l’inauguration de la Fondation Brocher

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Karen Birmingham

Epidemiology

04.09.2012-31.10.2012

The Avon Longitudinal Study of Parents And Children (ALSPAC) Ethics and Law Committee : the first 16 years of ethical protection for an epidemiological birth cohort

Karen intends to use her time at the Brocher Foundation to describe the work of the committee during its first 16 years, summarising the ethical issues, discussions and outcomes and putting the committee’s work into the legal and ethical context of the time. This monograph will be written in lay language for the benefit of Study participants, most of whom are unaware of the effort put into establishing the processes to ensure their protection.

Discipline : Epidemiology

Karen Birmingham has a background in nursing but has worked in epidemiology at the University of Bristol since 1988. Currently she is the Research Ethics Manger and Ethics Archive Manger for the Avon Longitudinal Study for Parents and Children (ALSPAC).
ALSPAC which recruited 15,000 pregnant women in 1990 and continues to intensively collect data on these families, established its own ethics committee during the piloting phase, the first to be attached to a longitudinal epidemiological study. The ALSPAC Ethics and Law Committee is considered by many as innovative for this reason but also as it advised from the outset on the issues arising from the collection and utilisation of genetic data. These issues had hardly been addressed previously in the context of population studies (in contrast to clinical genetics).

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