Delivering Genetic Test Results

Designing a genetic test experience for consumers interested in finding if they are a carrier for any genes that could result in their child inheriting a genetic disorder

For privacy reasons, some details and designs have been omitted in this project page. The following is a high level view of the design process that was conducted.

Patient Education | Genomics

Role

I was heavily engaged in the user and market research phase of this project for one of the leading genetic screening companies on the globe. This laid the groundwork for the consumer facing designs that followed, the first version of which was released to a wider non-US market.

I was a designer in a 6 person team of
3 designers, 2 SMEs, and 1 product manager.

I collaborated with user research, competitive analysis, ideation, and user testing for all examples shown below.

Time

2 months | 8/2016 - 10/2016

Client

WuXi NextCODE

Background

WuXi NextCODE is a leader in genetic testing and analysis for researchers around the globe, including Iceland, China, England, and the United States.

With a plan to shift from the research market into the consumer market, they needed a design plan and vision in order to break into the $2.2 billion dollar carrier screening market. 1

Current carrier screening results are hard to understand, filled with medical jargon, and provide no next steps for the consumer. To better understand results, consumers usually get help from genetic counselors, or from primary care physicians.

Unfortunately, with less than 4,000 genetic counselors in the US 2, and only 14% of primary care physicians feeling confident in interpreting genetic results, much of the interpretation lies on the consumer. 3

Goals

The product goal was to design a carrier screening service that is clear and understandable for consumers interested in having children.

The business goal was to release the service within a short time frame.

Research

Being unfamiliar with genetic screening services, I started by reaching out to the genetics SME on the team to gain a high level understanding of the domain and how consumers typically use the service.

I reached out to WuXi NextCODE for a list of their leading competitors, and compared several facets of these services including features, pricing, and market impact.

To differentiate from the competition, I felt that it was important that the designs provided real-time information on the status of testing, and also a focus on testing couples and donors, as the primary purpose of genetic screening should be for seeing how children would be affected by the results of both parents.

Insights

A problem early on was that despite the very tight 2 month time frame for design, none of the users the client originally agreed to provide were available to speak with. A colleague and I suggested taking a more grassroots approach.

We ended up recruiting users from Craigslist, Reddit, and Facebook, to learn about their experiences in going through the carrier screening process. For additional SME feedback I ended up reaching out to genetics professors at my alma mater, the University of Washington.

Through these efforts, we ended up recruiting and interviewing 10 consumers, 8 clinicians, and 2 genetic counselors within the span of 2 weeks.

We created a journey map to summarize our learnings and we pulled 4 key types of insights regarding user needs and pain points using patterns found within the qualitative data gained from interviews.

Primary users

Consumers interested in determining if they are a carrier for any genes that could result in their child inheriting a genetic disorder.

Secondary users

Doctors discussing genetic screening results with their patients.

The 4 key types of insights for presenting complex genetic information to consumers:

Design

The following are open source designs for carrier screening results, developed by a design colleague using the insights found from my user and market research.

Impact

The product goal was to design a carrier screening service that is clear and understandable for consumers.

The business goal was to release the service within a short time frame.

References

  1. Global Carrier Screening Market - Segmented by Type of Test, Disease, and Geography - Growth, Trends and Forecasts. Retrieved July 24, 2018, from : https://www.mordorintelligence.com/industry-reports/carrier-screening-market
  2. What It Means to Be a Carrier of a Genetic Disorder. Retrieved July 24, 2018, from: https://jscreen.org/blog/what-it-means-to-be-a-carrier-of-a-genetic-disorder/
  3. Delivery Of Cascade Screening For Hereditary Conditions: A Scoping Review Of The Literature. Retrieved July 24, 2018, from : https://www.healthaffairs.org/doi/abs/10.1377/hlthaff.2017.1630