Literature DB >> 20418491

Ethical challenges in genotype-driven research recruitment.

Laura M Beskow1, Kristen N Linney, Rodney A Radtke, Erin L Heinzen, David B Goldstein.   

Abstract

Mesh:

Year:  2010        PMID: 20418491      PMCID: PMC2877567          DOI: 10.1101/gr.104455.109

Source DB:  PubMed          Journal:  Genome Res        ISSN: 1088-9051            Impact factor:   9.043


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  22 in total

1.  Clinical utility and full disclosure of genetic results to research participants.

Authors:  Richard R Sharp; Morris W Foster
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

2.  Interstitial deletion of 6q without phenotypic effect.

Authors:  Kerstin Hansson; Karoly Szuhai; Jeroen Knijnenburg; Arie van Haeringen; Joke de Pater
Journal:  Am J Med Genet A       Date:  2007-06-15       Impact factor: 2.802

3.  Public expectations for return of results--time to stop being paternalistic?

Authors:  Conrad Fernandez
Journal:  Am J Bioeth       Date:  2008-11       Impact factor: 11.229

4.  Don't throw the baby out with the bathwater: enabling a bottom-up approach in genome-wide association studies.

Authors:  Sean E McGuire; Amy L McGuire
Journal:  Genome Res       Date:  2008-11       Impact factor: 9.043

5.  A 10.7 Mb interstitial deletion of 13q21 without phenotypic effect defines a further non-pathogenic euchromatic variant.

Authors:  Andreas Roos; Miriam Elbracht; Michael Baudis; Jan Senderek; Nadine Schönherr; Thomas Eggermann; Herdit M Schüler
Journal:  Am J Med Genet A       Date:  2008-09-15       Impact factor: 2.802

Review 6.  Ethical, legal, and social implications of biobanks for genetics research.

Authors:  Susanne B Haga; Laura M Beskow
Journal:  Adv Genet       Date:  2008       Impact factor: 1.944

7.  Duty to disclose what? Querying the putative obligation to return research results to participants.

Authors:  F A Miller; R Christensen; M Giacomini; J S Robert
Journal:  J Med Ethics       Date:  2008-03       Impact factor: 2.903

8.  Informed consent for biorepositories: assessing prospective participants' understanding and opinions.

Authors:  Laura M Beskow; Elizabeth Dean
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2008-06       Impact factor: 4.254

9.  Large recurrent microdeletions associated with schizophrenia.

Authors:  Hreinn Stefansson; Dan Rujescu; Sven Cichon; Olli P H Pietiläinen; Andres Ingason; Stacy Steinberg; Ragnheidur Fossdal; Engilbert Sigurdsson; Thordur Sigmundsson; Jacobine E Buizer-Voskamp; Thomas Hansen; Klaus D Jakobsen; Pierandrea Muglia; Clyde Francks; Paul M Matthews; Arnaldur Gylfason; Bjarni V Halldorsson; Daniel Gudbjartsson; Thorgeir E Thorgeirsson; Asgeir Sigurdsson; Adalbjorg Jonasdottir; Aslaug Jonasdottir; Asgeir Bjornsson; Sigurborg Mattiasdottir; Thorarinn Blondal; Magnus Haraldsson; Brynja B Magnusdottir; Ina Giegling; Hans-Jürgen Möller; Annette Hartmann; Kevin V Shianna; Dongliang Ge; Anna C Need; Caroline Crombie; Gillian Fraser; Nicholas Walker; Jouko Lonnqvist; Jaana Suvisaari; Annamarie Tuulio-Henriksson; Tiina Paunio; Timi Toulopoulou; Elvira Bramon; Marta Di Forti; Robin Murray; Mirella Ruggeri; Evangelos Vassos; Sarah Tosato; Muriel Walshe; Tao Li; Catalina Vasilescu; Thomas W Mühleisen; August G Wang; Henrik Ullum; Srdjan Djurovic; Ingrid Melle; Jes Olesen; Lambertus A Kiemeney; Barbara Franke; Chiara Sabatti; Nelson B Freimer; Jeffrey R Gulcher; Unnur Thorsteinsdottir; Augustine Kong; Ole A Andreassen; Roel A Ophoff; Alexander Georgi; Marcella Rietschel; Thomas Werge; Hannes Petursson; David B Goldstein; Markus M Nöthen; Leena Peltonen; David A Collier; David St Clair; Kari Stefansson
Journal:  Nature       Date:  2008-09-11       Impact factor: 49.962

10.  Recurrent rearrangements of chromosome 1q21.1 and variable pediatric phenotypes.

Authors:  Heather C Mefford; Andrew J Sharp; Carl Baker; Andy Itsara; Zhaoshi Jiang; Karen Buysse; Shuwen Huang; Viv K Maloney; John A Crolla; Diana Baralle; Amanda Collins; Catherine Mercer; Koen Norga; Thomy de Ravel; Koen Devriendt; Ernie M H F Bongers; Nicole de Leeuw; William Reardon; Stefania Gimelli; Frederique Bena; Raoul C Hennekam; Alison Male; Lorraine Gaunt; Jill Clayton-Smith; Ingrid Simonic; Soo Mi Park; Sarju G Mehta; Serena Nik-Zainal; C Geoffrey Woods; Helen V Firth; Georgina Parkin; Marco Fichera; Santina Reitano; Mariangela Lo Giudice; Kelly E Li; Iris Casuga; Adam Broomer; Bernard Conrad; Markus Schwerzmann; Lorenz Räber; Sabina Gallati; Pasquale Striano; Antonietta Coppola; John L Tolmie; Edward S Tobias; Chris Lilley; Lluis Armengol; Yves Spysschaert; Patrick Verloo; Anja De Coene; Linde Goossens; Geert Mortier; Frank Speleman; Ellen van Binsbergen; Marcel R Nelen; Ron Hochstenbach; Martin Poot; Louise Gallagher; Michael Gill; Jon McClellan; Mary-Claire King; Regina Regan; Cindy Skinner; Roger E Stevenson; Stylianos E Antonarakis; Caifu Chen; Xavier Estivill; Björn Menten; Giorgio Gimelli; Susan Gribble; Stuart Schwartz; James S Sutcliffe; Tom Walsh; Samantha J L Knight; Jonathan Sebat; Corrado Romano; Charles E Schwartz; Joris A Veltman; Bert B A de Vries; Joris R Vermeesch; John C K Barber; Lionel Willatt; May Tassabehji; Evan E Eichler
Journal:  N Engl J Med       Date:  2008-09-10       Impact factor: 91.245

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  20 in total

1.  Research participants' perspectives on genotype-driven research recruitment.

Authors:  Laura M Beskow; Emily E Namey; R Jean Cadigan; Tracy Brazg; Julia Crouch; Gail E Henderson; Marsha Michie; Daniel K Nelson; Holly K Tabor; Benjamin S Wilfond
Journal:  J Empir Res Hum Res Ethics       Date:  2011-12       Impact factor: 1.742

2.  Recommendations for ethical approaches to genotype-driven research recruitment.

Authors:  Laura M Beskow; Stephanie M Fullerton; Emily E Namey; Daniel K Nelson; Arlene M Davis; Benjamin S Wilfond
Journal:  Hum Genet       Date:  2012-05-24       Impact factor: 4.132

3.  Genetic testing preferences in families containing multiple individuals with epilepsy.

Authors:  Janice O Okeke; Virginia E Tangel; Shawn T Sorge; Dale C Hesdorffer; Melodie R Winawer; Jeff Goldsmith; Jo C Phelan; Wendy K Chung; Sara Shostak; Ruth Ottman
Journal:  Epilepsia       Date:  2014-09-29       Impact factor: 5.864

4.  Bridging consent: from toll bridges to lift bridges?

Authors:  Isabelle Budin-Ljøsne; Anne Marie Tassé; Bartha Maria Knoppers; Jennifer R Harris
Journal:  BMC Med Genomics       Date:  2011-10-04       Impact factor: 3.063

5.  Epilepsy patient-participants and genetic research results as "answers".

Authors:  Emily E Namey; Laura M Beskow
Journal:  J Empir Res Hum Res Ethics       Date:  2011-12       Impact factor: 1.742

6.  Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment.

Authors:  Holly K Tabor; Tracy Brazg; Julia Crouch; Emily E Namey; Stephanie M Fullerton; Laura M Beskow; Benjamin S Wilfond
Journal:  J Empir Res Hum Res Ethics       Date:  2011-12       Impact factor: 1.742

7.  IRB chairs' perspectives on genotype-driven research recruitment.

Authors:  Laura M Beskow; Emily E Namey; Patrick R Miller; Daniel K Nelson; Alexandra Cooper
Journal:  IRB       Date:  2012 May-Jun

8.  Am I a control?: Genotype-driven research recruitment and self-understandings of study participants.

Authors:  Marsha Michie; R Jean Cadigan; Gail Henderson; Laura M Beskow
Journal:  Genet Med       Date:  2012-08-30       Impact factor: 8.822

9.  Evidence for penetrance in patients without a family history of disease: a systematic review.

Authors:  Heather Turner; Leigh Jackson
Journal:  Eur J Hum Genet       Date:  2020-01-14       Impact factor: 4.246

Review 10.  At the Research-Clinical Interface: Returning Individual Genetic Results to Research Participants.

Authors:  Kathleen M West; Erika Blacksher; Kerri L Cavanaugh; Stephanie M Fullerton; Ebele M Umeukeje; Bessie A Young; Wylie Burke
Journal:  Clin J Am Soc Nephrol       Date:  2020-02-10       Impact factor: 8.237

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