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Informing the Design of Direct-to-Consumer Interactive Personal Genomics Reports.

Shaer O, Nov O, Okerlund J, Balestra M, Stowell E, Ascher L, Bi J, Schlenker C, Ball M - J. Med. Internet Res. (2015)

Bottom Line: In particular, results showed that a new interactive bubble chart visualization designed for the study resulted in the highest comprehension scores, as well as the highest perceived comprehension scores.These scores were significantly higher than scores received using the industry standard tabular reports currently used for communicating personal genomic information.We discuss implications for designers and researchers.

View Article: PubMed Central - HTML - PubMed

Affiliation: Human-Computer Interaction Lab, Computer Science Department, Wellesley College, Wellesley, MA, United States.

ABSTRACT

Background: In recent years, people who sought direct-to-consumer genetic testing services have been increasingly confronted with an unprecedented amount of personal genomic information, which influences their decisions, emotional state, and well-being. However, these users of direct-to-consumer genetic services, who vary in their education and interests, frequently have little relevant experience or tools for understanding, reasoning about, and interacting with their personal genomic data. Online interactive techniques can play a central role in making personal genomic data useful for these users.

Objective: We sought to (1) identify the needs of diverse users as they make sense of their personal genomic data, (2) consequently develop effective interactive visualizations of genomic trait data to address these users' needs, and (3) evaluate the effectiveness of the developed visualizations in facilitating comprehension.

Methods: The first two user studies, conducted with 63 volunteers in the Personal Genome Project and with 36 personal genomic users who participated in a design workshop, respectively, employed surveys and interviews to identify the needs and expectations of diverse users. Building on the two initial studies, the third study was conducted with 730 Amazon Mechanical Turk users and employed a controlled experimental design to examine the effectiveness of different design interventions on user comprehension.

Results: The first two studies identified searching, comparing, sharing, and organizing data as fundamental to users' understanding of personal genomic data. The third study demonstrated that interactive and visual design interventions could improve the understandability of personal genomic reports for consumers. In particular, results showed that a new interactive bubble chart visualization designed for the study resulted in the highest comprehension scores, as well as the highest perceived comprehension scores. These scores were significantly higher than scores received using the industry standard tabular reports currently used for communicating personal genomic information.

Conclusions: Drawing on multiple research methods and populations, the findings of the studies reported in this paper offer deep understanding of users' needs and practices, and demonstrate that interactive online design interventions can improve the understandability of personal genomic reports for consumers. We discuss implications for designers and researchers.

No MeSH data available.


Genetic testing services used by study participants.
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figure10: Genetic testing services used by study participants.

Mentions: A total of 88% (32/36) of participants held academic degrees, 31% (11/36) held doctoral degrees, and 47% (17/36) worked in life sciences-related fields. All users had previous access to their testing service’s personal genomic report (eg, 23andMe report). Figure 10 demonstrates the distribution of personal genetic testing services. A total of 11% (4/36) of users first viewed their results within the 2 months prior to the study, 6% (2/36) within 3 to 6 months, and 83% (30/36) received the results more than 6 months prior to the study. Approximately one-third of participants had previous access to the GET-Evidence report generated by the PGP. Two-thirds of the users reviewed their GET-Evidence report for the first time in the workshop.


Informing the Design of Direct-to-Consumer Interactive Personal Genomics Reports.

Shaer O, Nov O, Okerlund J, Balestra M, Stowell E, Ascher L, Bi J, Schlenker C, Ball M - J. Med. Internet Res. (2015)

Genetic testing services used by study participants.
© Copyright Policy - open-access
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC4526936&req=5

figure10: Genetic testing services used by study participants.
Mentions: A total of 88% (32/36) of participants held academic degrees, 31% (11/36) held doctoral degrees, and 47% (17/36) worked in life sciences-related fields. All users had previous access to their testing service’s personal genomic report (eg, 23andMe report). Figure 10 demonstrates the distribution of personal genetic testing services. A total of 11% (4/36) of users first viewed their results within the 2 months prior to the study, 6% (2/36) within 3 to 6 months, and 83% (30/36) received the results more than 6 months prior to the study. Approximately one-third of participants had previous access to the GET-Evidence report generated by the PGP. Two-thirds of the users reviewed their GET-Evidence report for the first time in the workshop.

Bottom Line: In particular, results showed that a new interactive bubble chart visualization designed for the study resulted in the highest comprehension scores, as well as the highest perceived comprehension scores.These scores were significantly higher than scores received using the industry standard tabular reports currently used for communicating personal genomic information.We discuss implications for designers and researchers.

View Article: PubMed Central - HTML - PubMed

Affiliation: Human-Computer Interaction Lab, Computer Science Department, Wellesley College, Wellesley, MA, United States.

ABSTRACT

Background: In recent years, people who sought direct-to-consumer genetic testing services have been increasingly confronted with an unprecedented amount of personal genomic information, which influences their decisions, emotional state, and well-being. However, these users of direct-to-consumer genetic services, who vary in their education and interests, frequently have little relevant experience or tools for understanding, reasoning about, and interacting with their personal genomic data. Online interactive techniques can play a central role in making personal genomic data useful for these users.

Objective: We sought to (1) identify the needs of diverse users as they make sense of their personal genomic data, (2) consequently develop effective interactive visualizations of genomic trait data to address these users' needs, and (3) evaluate the effectiveness of the developed visualizations in facilitating comprehension.

Methods: The first two user studies, conducted with 63 volunteers in the Personal Genome Project and with 36 personal genomic users who participated in a design workshop, respectively, employed surveys and interviews to identify the needs and expectations of diverse users. Building on the two initial studies, the third study was conducted with 730 Amazon Mechanical Turk users and employed a controlled experimental design to examine the effectiveness of different design interventions on user comprehension.

Results: The first two studies identified searching, comparing, sharing, and organizing data as fundamental to users' understanding of personal genomic data. The third study demonstrated that interactive and visual design interventions could improve the understandability of personal genomic reports for consumers. In particular, results showed that a new interactive bubble chart visualization designed for the study resulted in the highest comprehension scores, as well as the highest perceived comprehension scores. These scores were significantly higher than scores received using the industry standard tabular reports currently used for communicating personal genomic information.

Conclusions: Drawing on multiple research methods and populations, the findings of the studies reported in this paper offer deep understanding of users' needs and practices, and demonstrate that interactive online design interventions can improve the understandability of personal genomic reports for consumers. We discuss implications for designers and researchers.

No MeSH data available.