Literature DB >> 26174936

Comparison of Informed Consent Preferences for Multiplex Genetic Carrier Screening among a Diverse Population.

Ashley Reeves1, Angela Trepanier2.   

Abstract

Multiplex genetic carrier screening is increasingly being integrated into reproductive care. Obtaining informed consent becomes more challenging as the number of screened conditions increases. Implementing a model of generic informed consent may facilitate informed decision-making. Current Wayne State University students and staff were invited to complete a web-based survey by blast email solicitation. Participants were asked to determine which of two generic informed consent scenarios they preferred: a brief versus a detailed consent. They were asked to rank the importance of different informational components in making an informed decision and to provide demographic information. Comparisons between informational preferences, demographic variables and scenario preferences were made. Six hundred ninety three participants completed the survey. When evaluating these generic consents, the majority preferred the more detailed consent (74.5%), and agreed that it provided enough information to make an informed decision (89.5%). Those who thought it would be more important to know the severity of the conditions being screened (p = .002) and range of symptoms (p = .000) were more likely to prefer the more detailed consent. There were no significant associations between scenario preferences and demographic variables. A generic consent was perceived to provide sufficient information for informed decision making regarding multiplex carrier screening with most preferring a more detailed version of the consent. Individual attitudes rather than demographic variables influenced preferences regarding the amount of information that should be included in the generic consent. The findings have implications for how clinicians approach providing tailored informed consent.

Entities:  

Keywords:  Attitudes; Decision making; Genetic screening; Informed consent; Multiplex carrier screening; Preferences; Reproductive care

Mesh:

Year:  2015        PMID: 26174936     DOI: 10.1007/s10897-015-9854-4

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  23 in total

1.  Informed decision making: an annotated bibliography and systematic review.

Authors:  H Bekker; J G Thornton; C M Airey; J B Connelly; J Hewison; M B Robinson; J Lilleyman; M MacIntosh; A J Maule; S Michie; A D Pearman
Journal:  Health Technol Assess       Date:  1999       Impact factor: 4.014

2.  A universal carrier test for the long tail of Mendelian disease.

Authors:  Balaji S Srinivasan; Eric A Evans; Jason Flannick; A Scott Patterson; Christopher C Chang; Tuan Pham; Sharon Young; Amit Kaushal; James Lee; Jessica L Jacobson; Pasquale Patrizio
Journal:  Reprod Biomed Online       Date:  2010-08-21       Impact factor: 3.828

3.  A new readability yardstick.

Authors:  R FLESCH
Journal:  J Appl Psychol       Date:  1948-06

Review 4.  Genetic screening.

Authors:  Wylie Burke; Beth Tarini; Nancy A Press; James P Evans
Journal:  Epidemiol Rev       Date:  2011-06-27       Impact factor: 6.222

Review 5.  ACOG Committee Opinion No. 486: Update on carrier screening for cystic fibrosis.

Authors: 
Journal:  Obstet Gynecol       Date:  2011-04       Impact factor: 7.661

6.  Expanded carrier screening in reproductive medicine-points to consider: a joint statement of the American College of Medical Genetics and Genomics, American College of Obstetricians and Gynecologists, National Society of Genetic Counselors, Perinatal Quality Foundation, and Society for Maternal-Fetal Medicine.

Authors:  Janice G Edwards; Gerald Feldman; James Goldberg; Anthony R Gregg; Mary E Norton; Nancy C Rose; Adele Schneider; Katie Stoll; Ronald Wapner; Michael S Watson
Journal:  Obstet Gynecol       Date:  2015-03       Impact factor: 7.661

7.  Knowledge and attitudes regarding expanded genetic carrier screening among women's healthcare providers.

Authors:  Kaylene Ready; Imran S Haque; Balaji S Srinivasan; John R Marshall
Journal:  Fertil Steril       Date:  2011-12-02       Impact factor: 7.329

8.  Information preferences of high literacy pregnant women regarding informed consent models for genetic carrier screening.

Authors:  K E Ormond; S Banuvar; A Daly; M Iris; J Minogue; S Elias
Journal:  Patient Educ Couns       Date:  2008-11-14

Review 9.  The future is now: carrier screening for all populations.

Authors:  Beth A Pletcher; Susan J Gross; Kristin G Monaghan; Deborah A Driscoll; Michael S Watson
Journal:  Genet Med       Date:  2008-01       Impact factor: 8.822

10.  ACMG position statement on prenatal/preconception expanded carrier screening.

Authors:  Wayne W Grody; Barry H Thompson; Anthony R Gregg; Lora H Bean; Kristin G Monaghan; Adele Schneider; Roger V Lebo
Journal:  Genet Med       Date:  2013-04-25       Impact factor: 8.822

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  7 in total

Review 1.  Interdisciplinary Models for Research and Clinical Endeavors in Genomic Medicine: A Scientific Statement From the American Heart Association.

Authors:  Kiran Musunuru; Pankaj Arora; John P Cooke; Jane F Ferguson; Ray E Hershberger; Kathleen T Hickey; Jin-Moo Lee; João A C Lima; Joseph Loscalzo; Naveen L Pereira; Mark W Russell; Svati H Shah; Farah Sheikh; Thomas J Wang; Calum A MacRae
Journal:  Circ Genom Precis Med       Date:  2018-06

2.  Business and Breakthrough: Framing (Expanded) Genetic Carrier Screening for the Public.

Authors:  Avery E Holton; Heather E Canary; Bob Wong
Journal:  Health Commun       Date:  2016-08-02

3.  A cross-sectional survey of genetic counselors providing carrier screening regarding GBA variants and Parkinson disease susceptibility.

Authors:  Tara A Jones; Jeanine Schulze; Sharon Aufox; Jason Rothstein; Aishwarya Arjunan
Journal:  J Assist Reprod Genet       Date:  2022-02-11       Impact factor: 3.412

4.  Preferences for learning different types of genome sequencing results among young breast cancer patients: Role of psychological and clinical factors.

Authors:  Kimberly A Kaphingst; Jennifer Ivanovich; Sarah Lyons; Barbara Biesecker; Rebecca Dresser; Ashley Elrick; Cindy Matsen; Melody Goodman
Journal:  Transl Behav Med       Date:  2018-01-29       Impact factor: 3.046

5.  Precision medicine: opportunities, possibilities, and challenges for patients and providers.

Authors:  Samantha A Adams; Carolyn Petersen
Journal:  J Am Med Inform Assoc       Date:  2016-03-14       Impact factor: 7.942

6.  Pre- and post-testing counseling considerations for the provision of expanded carrier screening: exploration of European geneticists' views.

Authors:  Sandra Janssens; Davit Chokoshvili; Danya F Vears; Anne De Paepe; Pascal Borry
Journal:  BMC Med Ethics       Date:  2017-08-01       Impact factor: 2.652

Review 7.  The evolving landscape of expanded carrier screening: challenges and opportunities.

Authors:  Stephanie A Kraft; Devan Duenas; Benjamin S Wilfond; Katrina A B Goddard
Journal:  Genet Med       Date:  2018-09-24       Impact factor: 8.822

  7 in total

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