Literature DB >> 22241103

Navigating a research partnership between academia and industry to assess the impact of personalized genetic testing.

Lisa Soleymani Lehmann1, David J Kaufman, Richard R Sharp, Tanya A Moreno, Joanna L Mountain, J Scott Roberts, Robert C Green.   

Abstract

PURPOSE: To describe the process of structuring a partnership between academic researchers and two personalized genetic testing companies that would manage conflicts of interest while allowing researchers to study the impact of this nascent industry.
METHODS: We developed a transparent process of ongoing communication about the interests of all research partners to address challenges in establishing study goals, survey development, data collection, analysis, and manuscript preparation. Using the existing literature on conflicts of interest and our experience, we created a checklist for academic and industry researchers seeking to structure research partnerships.
RESULTS: Our checklist includes questions about the risk to research participants, sponsorship of the study, control of data analysis, freedom to publish results, the impact of the research on industry customers, openness to input from all partners, sharing results before publication, and publication of industry-specific data. Transparency is critical to building trust between partners. Involving all partners in the research development enhanced the quality of our research and provided an opportunity to manage conflicts early in the research process.
CONCLUSION: Navigating relationships between academia and industry is complex and requires strategies that are transparent and responsive to the concerns of all. Employing a checklist of questions prior to beginning a research partnership may help to manage conflicts of interest.

Entities:  

Mesh:

Year:  2012        PMID: 22241103      PMCID: PMC3763722          DOI: 10.1038/gim.2011.59

Source DB:  PubMed          Journal:  Genet Med        ISSN: 1098-3600            Impact factor:   8.822


  28 in total

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3.  FDA to regulate direct-to-consumer genetic tests.

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4.  Impugning the integrity of medical science: the adverse effects of industry influence.

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5.  Direct-to-consumer genetics and health policy: a worst-case scenario?

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Journal:  Am J Bioeth       Date:  2009       Impact factor: 11.229

6.  Understanding financial conflicts of interest.

Authors:  D F Thompson
Journal:  N Engl J Med       Date:  1993-08-19       Impact factor: 91.245

7.  Growing pains for new academic/industry relationships.

Authors:  D Blumenthal
Journal:  Health Aff (Millwood)       Date:  1994       Impact factor: 6.301

8.  An epidemiological perspective on the future of direct-to-consumer personal genome testing.

Authors:  A Cecile Jw Janssens; Cornelia M van Duijn
Journal:  Investig Genet       Date:  2010-10-04

9.  Consumer perceptions of direct-to-consumer personalized genomic risk assessments.

Authors:  Cinnamon S Bloss; Laura Ornowski; Elana Silver; Michele Cargill; Vance Vanier; Nicholas J Schork; Eric J Topol
Journal:  Genet Med       Date:  2010-09       Impact factor: 8.822

10.  What is the clinical utility of genetic testing?

Authors:  Scott D Grosse; Muin J Khoury
Journal:  Genet Med       Date:  2006-07       Impact factor: 8.822

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  18 in total

1.  Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience.

Authors:  Sarah E Gollust; Stacy W Gray; Deanna Alexis Carere; Barbara A Koenig; Lisa Soleymani Lehmann; Amy L McGUIRE; Richard R Sharp; Kayte Spector-Bagdady; N A Wang; Robert C Green; J Scott Roberts
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2.  Converging technologies: a critical analysis of cognitive enhancement for public policy application.

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4.  Direct-to-Consumer Genetic Testing and Personal Genomics Services: A Review of Recent Empirical Studies.

Authors:  J Scott Roberts; Jenny Ostergren
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5.  Personal Genomic Testing for Cancer Risk: Results From the Impact of Personal Genomics Study.

Authors:  Stacy W Gray; Sarah E Gollust; Deanna Alexis Carere; Clara A Chen; Angel Cronin; Sarah S Kalia; Huma Q Rana; Mack T Ruffin; Catharine Wang; J Scott Roberts; Robert C Green
Journal:  J Clin Oncol       Date:  2016-12-12       Impact factor: 44.544

6.  How Well Do Customers of Direct-to-Consumer Personal Genomic Testing Services Comprehend Genetic Test Results? Findings from the Impact of Personal Genomics Study.

Authors:  Jenny E Ostergren; Michele C Gornick; Deanna Alexis Carere; Sarah S Kalia; Wendy R Uhlmann; Mack T Ruffin; Joanna L Mountain; Robert C Green; J Scott Roberts
Journal:  Public Health Genomics       Date:  2015-06-16       Impact factor: 2.000

7.  What adolescents enrolled in genomic addiction research want to know about conflicts of interest.

Authors:  Marilyn E Coors; Kristen M Raymond; Shannon K McWilliams; Christian J Hopfer; Susan K Mikulich-Gilbertson
Journal:  Drug Alcohol Depend       Date:  2014-12-15       Impact factor: 4.492

8.  Utilization of Genetic Counseling after Direct-to-Consumer Genetic Testing: Findings from the Impact of Personal Genomics (PGen) Study.

Authors:  Diane R Koeller; Wendy R Uhlmann; Deanna Alexis Carere; Robert C Green; J Scott Roberts
Journal:  J Genet Couns       Date:  2017-05-16       Impact factor: 2.537

9.  Consumers report lower confidence in their genetics knowledge following direct-to-consumer personal genomic testing.

Authors:  Deanna Alexis Carere; Peter Kraft; Kimberly A Kaphingst; J Scott Roberts; Robert C Green
Journal:  Genet Med       Date:  2015-03-26       Impact factor: 8.822

10.  Explaining, not just predicting, drives interest in personal genomics.

Authors:  Susanne F Meisel; Deanna Alexis Carere; Jane Wardle; Sarah S Kalia; Tanya A Moreno; Joanna L Mountain; J Scott Roberts; Robert C Green
Journal:  Genome Med       Date:  2015-08-01       Impact factor: 11.117

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