Social Networkers' Attitudes Toward Direct-to-Consumer Personal Genome Testing

Abstract

Purpose: This study explores social networkers' interest in and attitudes toward personal genome testing (PGT), focusing on expectations related to the clinical integration of PGT results. Methods: An online survey of 1,087 social networking users was conducted to assess 1) use and interest in PGT; 2) attitudes toward PGT companies and test results; and 3) expectations for the clinical integration of PGT. Descriptive statistics were calculated to summarize respondents' characteristics and responses. Results: Six percent of respondents have used PGT, 64% would consider using PGT, and 30% would not use PGT. Of those who would consider using PGT, 74% report they would use it to gain knowledge about disease in their family. 34% of all respondents consider the information obtained from PGT to be a medical diagnosis. 78% of those who would consider PGT would ask their physician for help interpreting test results, and 61% of all respondents believe physicians have a professional obligation to help individuals interpret PGT results. Conclusion: Respondents express interest in using PGT services, primarily for purposes related to their medical care and expect physicians to help interpret PGT results. Physicians should therefore be prepared for patient demands for information and counsel on the basis of PGT results.

Keywords:

• personal genome testing
• patient expectations
• genetics
• ethics
• policy

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Corrigendum

Acknowledgment

Generously supported with funding from the Gillson Logenbaugh Foundation, the ARCO Foundation Young Teacher-Investigator Award, the Greenwall Foundation Faculty Scholars Program in Bioethics, NIH/NHGRI-ELSI R01 HG004333, and NIH/NCI P30 CA125123. We would like to thank Laurence B. McCullough, PhD, for his thoughtful comments and Melody Slashinski, MA, for her help in editing the final version of this manuscript.

Notes

^a % calculated from number of respondents who answered question;

^b respondents could select more than one choice.

^c n represents number of respondents who agreed with statement, N represents total number of respondents who answered statement.

^d Scale: strongly disagree, disagree, neither agree nor disagree, agree, strongly agree.

^a Scale: Strongly Disagree, Disagree, Neither Agree nor Disagree, Agree, Strongly Agree.