Literature DB >> 22228057

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

Emily E Namey1, Laura M Beskow.   

Abstract

Better understanding of how research participants with a known condition ascribe meaning to individual genetic results is important to help researchers and institutional review boards evaluate the potential benefits and harms of disclosing results in the context of genotype-driven research recruitment. Based on 29 in-depth interviews with epilepsy patients participating in a genetic study, we found that this population of research subjects anticipated that genetic research results would provide answers to a range of questions about the research process and their condition. Their multi-layered interpretations underscore the need for clear communication about the nature and limitations of results if individual or aggregate genetic results are returned in the process of recruitment for additional research.

Entities:  

Mesh:

Year:  2011        PMID: 22228057      PMCID: PMC3399113          DOI: 10.1525/jer.2011.6.4.21

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  14 in total

1.  Medical researchers' ancillary clinical care responsibilities.

Authors:  Leah Belsky; Henry S Richardson
Journal:  BMJ       Date:  2004-06-19

2.  The ancillary-care responsibilities of medical researchers. An ethical framework for thinking about the clinical care that researchers owe their subjects.

Authors:  Henry S Richardson; Leah Belsky
Journal:  Hastings Cent Rep       Date:  2004 Jan-Feb       Impact factor: 2.683

3.  Ethical challenges in genotype-driven research recruitment.

Authors:  Laura M Beskow; Kristen N Linney; Rodney A Radtke; Erin L Heinzen; David B Goldstein
Journal:  Genome Res       Date:  2010-04-23       Impact factor: 9.043

Review 4.  Disclosure of research results from cancer genomic studies: state of the science.

Authors:  Lynn G Dressler
Journal:  Clin Cancer Res       Date:  2009-06-23       Impact factor: 12.531

5.  Offering individual genetic research results: context matters.

Authors:  Laura M Beskow; Wylie Burke
Journal:  Sci Transl Med       Date:  2010-06-30       Impact factor: 17.956

6.  Reporting genetic results in research studies: summary and recommendations of an NHLBI working group.

Authors:  Ebony B Bookman; Aleisha A Langehorne; John H Eckfeldt; Kathleen C Glass; Gail P Jarvik; Michael Klag; Greg Koski; Arno Motulsky; Benjamin Wilfond; Teri A Manolio; Richard R Fabsitz; Russell V Luepker
Journal:  Am J Med Genet A       Date:  2006-05-15       Impact factor: 2.802

7.  Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group.

Authors:  Richard R Fabsitz; Amy McGuire; Richard R Sharp; Mona Puggal; Laura M Beskow; Leslie G Biesecker; Ebony Bookman; Wylie Burke; Esteban Gonzalez Burchard; George Church; Ellen Wright Clayton; John H Eckfeldt; Conrad V Fernandez; Rebecca Fisher; Stephanie M Fullerton; Stacey Gabriel; Francine Gachupin; Cynthia James; Gail P Jarvik; Rick Kittles; Jennifer R Leib; Christopher O'Donnell; P Pearl O'Rourke; Laura Lyman Rodriguez; Sheri D Schully; Alan R Shuldiner; Rebecca K F Sze; Joseph V Thakuria; Susan M Wolf; Gregory L Burke
Journal:  Circ Cardiovasc Genet       Date:  2010-12

8.  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

9.  Public expectations for return of results from large-cohort genetic research.

Authors:  Juli Murphy; Joan Scott; David Kaufman; Gail Geller; Lisa LeRoy; Kathy Hudson
Journal:  Am J Bioeth       Date:  2008-11       Impact factor: 11.229

10.  Subjects matter: a survey of public opinions about a large genetic cohort study.

Authors:  David Kaufman; Juli Murphy; Joan Scott; Kathy Hudson
Journal:  Genet Med       Date:  2008-11       Impact factor: 8.822

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  10 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.  The meaning of genetic research results: reflections from individuals with and without a known genetic disorder.

Authors:  R Jean Cadigan; Marsha Michie; Gail Henderson; Arlene M Davis; Laura M Beskow
Journal:  J Empir Res Hum Res Ethics       Date:  2011-12       Impact factor: 1.742

3.  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

4.  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

5.  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

6.  'Information is information': a public perspective on incidental findings in clinical and research genome-based testing.

Authors:  S Daack-Hirsch; M Driessnack; A Hanish; V A Johnson; L L Shah; C M Simon; J K Williams
Journal:  Clin Genet       Date:  2013-05-03       Impact factor: 4.438

7.  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

Review 8.  Ethical, legal and social/societal implications (ELSI) of recall-by-genotype (RbG) and genotype-driven-research (GDR) approaches: a scoping review.

Authors:  Katharina Tschigg; Luca Consoli; Roberta Biasiotto; Deborah Mascalzoni
Journal:  Eur J Hum Genet       Date:  2022-06-15       Impact factor: 5.351

9.  Balancing scientific interests and the rights of participants in designing a recall by genotype study.

Authors:  Deborah Mascalzoni; Roberta Biasiotto; Max Borsche; Norbert Brüggemann; Alessandro De Grandi; Martin Goegele; Sara Frygner-Holm; Christine Klein; Maria Kösters; Ciara Staunton; Peter P Pramstaller; Michael Krawczak; Andrew A Hicks
Journal:  Eur J Hum Genet       Date:  2021-05-13       Impact factor: 4.246

10.  Genotype-driven recruitment: a strategy whose time has come?

Authors:  Isabelle Budin-Ljøsne; Kaitlin J Soye; Anne Marie Tassé; Bartha Maria Knoppers; Jennifer R Harris
Journal:  BMC Med Genomics       Date:  2013-05-23       Impact factor: 3.063

  10 in total

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