ALSPAC Ethics & Law Committee

From the outset, ALSPAC had its own Ethics & Law committee. The committee reviews all studies where new data are collected, and not those that make use of existing data. It pays attention to the nature and importance of the study being proposed, the nature of data being collected, the written materials produced to collect data and to inform the participants, and the process of consent. In doing so the focus is on the risks (if any) incurred by participation in the study, and balancing them with the benefits of the study; care of research staff; and matters of confidentiality.

The committee concerns itself particularly with such matters as:

  • Consent. This was a concern for much of ALSPAC’s existence, but with the maturity of the cohort is now of less concern.
  • Ensuring that the cohort is as representative and broadly based as possible.
  • Protecting the participants from research that might be too intrusive or burdensome. The Committee will, on occasions, ask for reassurance that a study necessarily requires the participation of members of the ALSPAC cohort, and cannot conveniently and equally well be conducted recruiting from elsewhere.
  • Disclosure or non-disclosure of research findings to participants.

Supporting documents:



Membership

The committee comprises clinicians, researchers, people with legal expertise and lay people, some of whom have been involved in the study as participants.

The committee manager is Karen Birmingham [Tel: + 44 (0) 117 3310069 or Karen.Birmingham@bristol.ac.uk]