Eliciting Parents' Preferences For Receiving Secondary Genomic - - PowerPoint PPT Presentation

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Eliciting Parents' Preferences For Receiving Secondary Genomic - - PowerPoint PPT Presentation

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Eliciting Parents' Preferences For Receiving Secondary Genomic Results Kyle B. Brothers, MD Genomics and Ethics in Research and Medical Decision Making Cincinnati, OH March 12, 2015 Outline Framework Focus groups on clinical

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Eliciting Parents' Preferences For Receiving Secondary Genomic Results

Genomics and Ethics in Research and Medical Decision Making Cincinnati, OH March 12, 2015 Kyle B. Brothers, MD

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  • Framework

– Focus groups on clinical pharmacogenomics

  • Novel Preferences Instrument

– Genomic Results Patient Preferences Questionnaire

  • Experience in the Field

– Parents preferences from our CSER Project

Outline

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Framework

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  • With respect to secondary findings:

– Important to respect preferences – If I do not know, doctor should not know

Focus Groups Findings

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Analysis Provider Patient

Filtering Based on Preferences

Conclusion 1: Preferences should be applied at the level

  • f analysis. Therefore, they must be structured.
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PREDICT Focus Groups (2011) Everything Nothing Everything - 1

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PREDICT Focus Groups (2011) Everything Nothing Everything - 1

“If that genetic testing was offered today, and my mother has [Alzheimer’s], I don’t want to know.” “My best friend’s mother has Alzheimer’s. She has chosen to not have that genetic testing.”

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PREDICT Focus Groups (2011) Everything Nothing Everything - 1

Conclusion 2: Patients should be able to record preferences that result from personal experience with specific conditions.

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Novel Preferences Instrument

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Genomic Results Patient Preferences Questionnaire

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Genomic Results Patient Preferences Questionnaire

14 questions

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GRPPQ

  • Cardiovascular Disorders
  • Neurodegenerative Disorders
  • Mental Illness
  • Cancer
  • Carrier Status/Heritable Risk
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Experience in the Field

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Genomic Diagnosis in Children with Developmental Delay

3-5% 15-20% ?

Karyotype Microarray Next-Generation Sequencing

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  • Collecting preferences at enrollment will

increase perceived control and decrease anxiety (Clinical Trial)

  • GRPPQ will adequately capture parents’

preferences

  • GRPPQ preferences can be used to infer

parents’ other preferences

Project 3 Hypotheses

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Clinical Trial Design

Informed Consent, Baseline Questionnaire GC & Preferences 50% GC Only 50% Randomize Follow-Up Questionnaire Return of Results Preferences and Return of Results Enrollment Visit ROR Visit

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Group 1

(Preferences at Enrollment)

Group 2

(Preferences at ROR)

Mothers

62 (50%) 24 (50%)

Fathers

62 (50%) 24 (50%)

White

99 (80%) 42 (88%)

Black/African-American

8 (6%) 0 (0%)

Other

17 (14%) 6 (12%)

20's

19 (15%) 2 (4%)

30's

51 (41%) 15 (31%)

40's

28 (23%) 22 (46%)

≥50

24 (19%) 9 (19%)

Table 1

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Preferences By Group

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Preferences By Gender

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Preferences By Category

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Preferences By Category

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  • Parents report that the GRPPQ captures their

preferences.

  • Most parents understand questionnaire, but

misunderstandings do occur

  • Eliciting preferences can create assumption that we

are looking for listed conditions, and that such analysis would be meaningful

Qualitative Findings

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HudsonAlpha CSER Team

  • Rick Myers (PI)
  • Greg Cooper
  • Greg Barsch
  • Ed Lose
  • Martina Bebin
  • Kevin Bowling
  • Elizabeth Newton
  • Shirley Simmons

KCPCRU

  • Carla Rich
  • Jan Sullivan
  • Sarah Penny
  • Kimberly Blair

Thank You!