1.

Record Nr.

UNINA9910828217803321

Titolo

Achieving justice in genomic translation : re-thinking the pathway to benefit / / edited by Wylie Burke ... [et al.]

Pubbl/distr/stampa

Oxford ; ; New York, : Oxford University Press, 2011

ISBN

1-283-42793-1

9786613427939

0-19-990974-1

Edizione

[1st ed.]

Descrizione fisica

1 online resource (223 p.)

Altri autori (Persone)

BurkeWylie

Disciplina

174.2/96042

Soggetti

Human genetics - Research - Moral and ethical aspects

Genomics - Research - Moral and ethical aspects

Genetic screening - Moral and ethical aspects

Lingua di pubblicazione

Inglese

Formato

Materiale a stampa

Livello bibliografico

Monografia

Note generali

Description based upon print version of record.

Nota di bibliografia

Includes bibliographical references and index.

Nota di contenuto

Achieving justice in genomic translation: re-thinking the pathway to benefit / Sara Goering, Suzanne Holland, and Kelly A. Edwards -- The social, political, and economic underpinnings of biomedical research and development: a formidable status quo / Patricia Kuszler -- The input-output problem: whose DNA do we study, and why does it matter? / Stephanie Malia Fullerton -- The autism genetic resource exchange: changing pace, priorities, and roles in discovery science / Holly K. Tabor and Martine Lapp. Commentary on the discovery phase of research / Sara Goering, Suzanne Holland, and Kelly A. Edwards -- Early assessment of translational opportunities / Patricia Deverka and David L. Veenstra -- The power of knowledge: how carrier and prenatal screening altered the clinical goals of genetic testing / Nancy Press ... [et al.]. Commentary on the development phase of the translational cycle / Sara Goering, Suzanne Holland, and Kelly A. Edwards -- Integrating genetic tests into clinical practice: the role of guidelines / Anne-Marie Laberge and Wylie Burke -- Genomics and the health commons / Nora Henrikson and Wylie Burke -- Commentary on the delivery phase of the translational cycle / Sara Goering, Suzanne Holland, and Kelly A. Edwards -- The role of advocacy in newborn



screening / Catharine Riley and Carolyn Watts -- What outcomes? whose benefits? / Wylie Burke and Nancy Press. Commentary on the outcomes phase of the translational cycle / Sara Goering, Suzanne Holland, and Kelly A. Edwards -- Bringing the best science to bear on youth suicide: why community perspectives matter / Rosalina James and Helene Starks.

Sommario/riassunto

This book explores implicit choices made by researchers, policy makers, and funders regarding who benefits from society's investment in health research. The authors focus specifically on genetic research and examine whether such research tends to reduce