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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.


Related in: MedlinePlus

Table (control condition): gene variants are sorted by name. Variants can be further sorted by clicking on the arrows in each of the columns. The table is similar to the existing GET-Evidence report.
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figure3: Table (control condition): gene variants are sorted by name. Variants can be further sorted by clicking on the arrows in each of the columns. The table is similar to the existing GET-Evidence report.

Mentions: An experimental website was developed specifically for this study, in which different versions of a personal genomics report using GET-Evidence interpretation (see Figures 3-9) were presented. The control condition for this study was a sortable table (see Figure 3), similar to the existing tabular GET-Evidence report. Genetic risk reports from other existing direct-to-consumer genetic testing services (eg, 23andMe) were not included in this evaluation, because they offer medical rather than genetic interpretation of the data.


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)

Table (control condition): gene variants are sorted by name. Variants can be further sorted by clicking on the arrows in each of the columns. The table is similar to the existing GET-Evidence report.
© Copyright Policy - open-access
Related In: Results  -  Collection

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

figure3: Table (control condition): gene variants are sorted by name. Variants can be further sorted by clicking on the arrows in each of the columns. The table is similar to the existing GET-Evidence report.
Mentions: An experimental website was developed specifically for this study, in which different versions of a personal genomics report using GET-Evidence interpretation (see Figures 3-9) were presented. The control condition for this study was a sortable table (see Figure 3), similar to the existing tabular GET-Evidence report. Genetic risk reports from other existing direct-to-consumer genetic testing services (eg, 23andMe) were not included in this evaluation, because they offer medical rather than genetic interpretation of the data.

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.


Related in: MedlinePlus