TY - BOOK AU - Birmingham, Karen AB - "Available Open Access under CC-BY-NC licence The Avon Longitudinal Study of Parents and Children (ALSPAC), also known as Children of the 90s, is a world-leading birth cohort study that uniquely enrolled participants in utero and obtained genetic material from a geographic population. It instigated the innovative but controversial ALSPAC Ethics and Law Committee. This book describes in detail the early work of this Committee, from establishing the core ethical principles necessary to protect participants, to the evolution of policies concerning confidentiality and anonymity, consent, non-intervention and disclosure of individual results, data access and security. Quotes from interviews with early members of the Committee reflect not only on its pioneering work but also on the unusual style and inspirational leadership of the first Chair, Professor Michael Furmston. This will be of interest to those involved in other cohort studies in understanding the evolution of ethical policies as ALSPAC developed." The Avon Longitudinal Study of Parents and Children (ALSPAC), also known as Children of the 90s, is a world-leading birth cohort study that uniquely enrolled participants in utero and obtained genetic material from a geographic population. It instigated the innovative but controversial ALSPAC Ethics and Law Committee. This book describes in detail the early work of this Committee, from establishing the core ethical principles necessary to protect participants, to the evolution of policies concerning confidentiality and anonymity, consent, non-intervention and disclosure of individual results, data access and security. Quotes from interviews with early members of the Committee reflect not only on its pioneering work but also on the unusual style and inspirational leadership of the first Chair, Professor Michael Furmston. This will be of interest to those involved in other cohort studies in understanding the evolution of ethical policies as ALSPAC developed." DO - 10.1332/9781447340423 ID - OAPEN ID: 643791 ID - OAPEN ID: OCN: 1030816779 ID - OAPEN ID: 1072042079 KW - avon longitudinal study of parents and children KW - children of the 90s KW - longitudinal birth cohorts KW - research ethics committees KW - genetic epidemiology KW - Institutional review board KW - Jean Golding KW - National Health Service L1 - https://library.oapen.org/bitstream/id/96074c09-925d-42d9-b7a2-b60493fb7239/643791.pdf LA - English LK - http://library.oapen.org/handle/20.500.12657/30704 PB - Policy Press PP - Bristol PY - 2018 SN - 9781447340423 TI - Pioneering ethics in a longitudinal studynull ER -