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

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

Research output: Contribution to journalArticle

38 Citations (Scopus)

Abstract

Aim: To assess customer comprehension of health-related personal genomic testing (PGT) results. Methods: We presented sample reports of genetic results and examined responses to comprehension questions in 1,030 PGT customers (mean age: 46.7 years; 59.9% female; 79.0% college graduates; 14.9% non-White; 4.7% of Hispanic/Latino ethnicity). Sample reports presented a genetic risk for Alzheimer's disease and type 2 diabetes, carrier screening summary results for >30 conditions, results for phenylketonuria and cystic fibrosis, and drug response results for a statin drug. Logistic regression was used to identify correlates of participant comprehension. Results: Participants exhibited high overall comprehension (mean score: 79.1% correct). The highest comprehension (range: 81.1-97.4% correct) was observed in the statin drug response and carrier screening summary results, and lower comprehension (range: 63.6-74.8% correct) on specific carrier screening results. Higher levels of numeracy, genetic knowledge, and education were significantly associated with greater comprehension. Older age (≥60 years) was associated with lower comprehension scores. Conclusions: Most customers accurately interpreted the health implications of PGT results; however, comprehension varied by demographic characteristics, numeracy and genetic knowledge, and types and format of the genetic information presented. Results suggest a need to tailor the presentation of PGT results by test type and customer characteristics.

Original languageEnglish (US)
Pages (from-to)216-224
Number of pages9
JournalPublic health genomics
Volume18
Issue number4
DOIs
StatePublished - Jul 25 2015

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Genetic Services
Genomics
Hydroxymethylglutaryl-CoA Reductase Inhibitors
Hispanic Americans
Phenylketonurias
Drug Carriers
Health
Cystic Fibrosis
Pharmaceutical Preparations
Type 2 Diabetes Mellitus
Logistic Models
Demography
Education

All Science Journal Classification (ASJC) codes

  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)

Cite this

Ostergren, Jenny E. ; Gornick, Michele C. ; Carere, Deanna Alexis ; Kalia, Sarah S. ; Uhlmann, Wendy R. ; Ruffin, Mack T. ; Mountain, Joanna L. ; Green, Robert C. ; Roberts, J. Scott. / How Well Do Customers of Direct-to-Consumer Personal Genomic Testing Services Comprehend Genetic Test Results? Findings from the Impact of Personal Genomics Study for the PGen Study Group. In: Public health genomics. 2015 ; Vol. 18, No. 4. pp. 216-224.
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abstract = "Aim: To assess customer comprehension of health-related personal genomic testing (PGT) results. Methods: We presented sample reports of genetic results and examined responses to comprehension questions in 1,030 PGT customers (mean age: 46.7 years; 59.9{\%} female; 79.0{\%} college graduates; 14.9{\%} non-White; 4.7{\%} of Hispanic/Latino ethnicity). Sample reports presented a genetic risk for Alzheimer's disease and type 2 diabetes, carrier screening summary results for >30 conditions, results for phenylketonuria and cystic fibrosis, and drug response results for a statin drug. Logistic regression was used to identify correlates of participant comprehension. Results: Participants exhibited high overall comprehension (mean score: 79.1{\%} correct). The highest comprehension (range: 81.1-97.4{\%} correct) was observed in the statin drug response and carrier screening summary results, and lower comprehension (range: 63.6-74.8{\%} correct) on specific carrier screening results. Higher levels of numeracy, genetic knowledge, and education were significantly associated with greater comprehension. Older age (≥60 years) was associated with lower comprehension scores. Conclusions: Most customers accurately interpreted the health implications of PGT results; however, comprehension varied by demographic characteristics, numeracy and genetic knowledge, and types and format of the genetic information presented. Results suggest a need to tailor the presentation of PGT results by test type and customer characteristics.",
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How Well Do Customers of Direct-to-Consumer Personal Genomic Testing Services Comprehend Genetic Test Results? Findings from the Impact of Personal Genomics Study for the PGen Study Group. / Ostergren, Jenny E.; Gornick, Michele C.; Carere, Deanna Alexis; Kalia, Sarah S.; Uhlmann, Wendy R.; Ruffin, Mack T.; Mountain, Joanna L.; Green, Robert C.; Roberts, J. Scott.

In: Public health genomics, Vol. 18, No. 4, 25.07.2015, p. 216-224.

Research output: Contribution to journalArticle

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