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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.


Reported impact of users' personal genomic information on their lives. Multiple users listed more than one influence.
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figure11: Reported impact of users' personal genomic information on their lives. Multiple users listed more than one influence.

Mentions: Most participants provided more than one reason for exploring their genetic data, including understanding family and individual health risks, gaining insight into ancestry, satisfying curiosity, advancing science, and promoting open-source science. Specifically, 36% (13/36) listed understanding health risks as the primary reason for exploring personal genomics information, while over 66% (24/36) listed advancing genetic, scientific, and health research as their main reason. A total of 14% (5/36) noted that promoting open-source data was a motivation, and 19% (7/36) of users mentioned curiosity. Participants were also asked to describe how knowledge of their genetic traits and health risks impacted their lives. Figure 11 shows their responses. Multiple users listed more than one aspect of influence.


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)

Reported impact of users' personal genomic information on their lives. Multiple users listed more than one influence.
© Copyright Policy - open-access
Related In: Results  -  Collection

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

figure11: Reported impact of users' personal genomic information on their lives. Multiple users listed more than one influence.
Mentions: Most participants provided more than one reason for exploring their genetic data, including understanding family and individual health risks, gaining insight into ancestry, satisfying curiosity, advancing science, and promoting open-source science. Specifically, 36% (13/36) listed understanding health risks as the primary reason for exploring personal genomics information, while over 66% (24/36) listed advancing genetic, scientific, and health research as their main reason. A total of 14% (5/36) noted that promoting open-source data was a motivation, and 19% (7/36) of users mentioned curiosity. Participants were also asked to describe how knowledge of their genetic traits and health risks impacted their lives. Figure 11 shows their responses. Multiple users listed more than one aspect of influence.

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.