As discussed in my last post, I recently completed my UNT applied anthropology thesis and plan to blog about that experience. I am hoping that up-and-coming students can find some of the content useful for their own journey. Furthermore, I think it is important that we are discussing the opportunities and threats of Direct-to-Consumer Genetics (DTCG).
So to begin, I am going to start by sharing an ethnography proposal example. This is the specific proposal I submitted to my potential client, Sequencing.com
My DTCG Ethnography Proposal Example
By: Matt Artz
Last Updated: 8/22/2017
Genomics offers a tremendous opportunity to improve health outcomes, however, until recently, genomic sequencing was prohibitively expensive. The Human Genome Project which started in 1990, and took 13 years to completely sequence the entire human genome, cost $3 billion. But the costs did not end there. The costs of storing genetic data were also prohibitive given that a full genome sequence is about 200 gigabytes (GB) of data, and the average cost of storing data in the early 2000’s was $11/GB (Statistics Brain, 2016). However, over the past decade and a half, costs have plummeted. Today many direct-to-consumers genealogy services such as 23andMe.com, FTDNA.com, and Ancestry.com sell partial genome sequencing services for genetic-genealogical research for around the $99 price point, and data storage is now offered for free with these services. This has helped to incentivize many more consumers to take part in this genealogical revolution.
However, despite the rise of genetic genealogy over the last decade, only a fraction of the US population is taking advantage of the opportunity genomics offers (Teo, 2017) for health. In fact, a recent UBS survey of 1,000 people representative of the US population found that only 5 percent said they had been tested on their own initiative, and 50 percent said they were likely not to get tested (Ray, 2016).
Access to genetic testing for health has also been a major hurdle. Despite the early success of companies like 23andMe which launched in 2007, the direct-to-consumer genomics market stalled in 2013 when the FDA sent shockwaves through the industry by ordering 23andMe to stop selling their tests given concerns “about the public health consequences of inaccurate results from the P.G.S. device” (FDA, 2014). However, this decision was reversed in April of 2017, and the direct-to-consumer genetic screening services were again allowed to report risk information for some conditions (FDA, 2017).
Compounding these issues is a lack of understanding on the part of consumers. In an August 2016 survey, 36 percent of consumer respondents stated they had not taken a genetic health test because there is “no need” and another 27 percent because they are “unware or need more information” (Rock Health, 2016).
However, the rise and popularity of genetic genealogy continues to spark interest. Ancestry.com recently announced they had reached 4 million users, a fourth of which occurred between January and April of 2017 (Ancestry.com, 2017) and UBS has made claims that they estimate the market to be valued at $7 billion based on their consumer research (Ray, 2016).
Given the growing market share of genetic genealogy consumers, Sequencing.com is now looking to pivot from its initial focus on researchers and bioinformatics professionals to attract and retain consumers. As a result of this, it is looking to better understand potential consumer users, which includes individuals that have previously used genealogical genomics products but not health products like Sequencing.com, as well as those who have used genomics health products such as Sequencing.com.
The Client Project
Sequencing.com is an online platform that helps users turn their genetic data into usable insights that can improve health outcomes (Sequencing.com, 2017). To achieve the goal of helping people turn their genetic data into something useful, Sequencing.com is partnering with Matt Artz to better understand consumer perceptions of genomics with the goal of increasing genetic health testing adoption among consumers.
Short-Term Goals For Client
The goal of the research is to develop a rich understanding of consumers perspectives of genomic products. Specifically, the research seeks to understand the differences between users who have previously used genomics-based genealogical products, but not genomics-related health products. It will also seek to understand how these different types of consumers make use of genomic products, why do they use these products, and what are their concerns. The research will then be used to advise Sequencing.com on how to best attract their intended audience of consumers who are potential users of health data, and how to keep them using the platform.
The focus of the study involves two groups of consumers who are defined as individuals that
have previously used genealogical genomics products but not health products like Sequencing.com,
as well as those who have used genomics health products such as Sequencing.com.
- What beliefs, values, lifestyle, priorities, needs and wants contribute to an interest in consumer genomics?
- What is the motivation for consumers to make use of consumer genomics?
- What is required to overcome any gaps in understanding genomics, to get consumers to make use of genomics?
- How does the genomic data need to be transformed and presented to create educational opportunities and meaningful insights that consumers can apply to improve health outcomes?
- What beliefs, values, lifestyle, priorities, needs and wants contribute to changing behavior in anticipation of achieving a positive health outcome?
- How do consumers feel about sharing and owning their data?
- What ethical and privacy concerns do consumers have?
The research will begin with a literature review of previously conducted research. The goal of the literature review is to begin to understand the landscape, uncover key insights that have been previously identified, and develop a theoretical framework for understanding consumer genomics.
Data Collection Tool Development
Following the literature review, an interview script will be developed based on the insights from the literature review to conduct some initial exploratory research, and then a follow-up interview script will be produced based on those insights for a deep dive interview session.
Ten participants, five male, and five female will be interviewed for the initial exploratory interviews.
Twenty participants, ten male, and ten female will be interviewed for the deep dive interviews which will also involve participant observation.
Matt Artz will seek out participants of only genealogical services based on his network for the genealogical group of consumers. For the group of consumers who have already used health-related products, Sequencing.com will pull a list of consumer users from their database.
In both cases, a random sample will be selected and contacted to ask if they would like to participate in the following research methods.
Data Collection Methods
- Initial exploratory interviews will be carried out to develop an initial understanding of the
consumer genomics landscape.
- Deep dive ethnographic interviews coupled with observations will be conducted as a follow up to the initial exploratory interviews. The interviews will explore the research questions in detail, and the observations will be used to gain a richer understanding of how they interact with Sequencing.com. The participants will be asked to think out loud while using the platform. They will be virtually observed using screen share software, and the video and audio will be recorded for future playback and analysis.
Interview and Observational Data Analysis
The data will be analyzed using descriptive statistics and graphical visualizations to examine the data for anomalies, and a multivariate analysis will be conducted to determine if any themes identified in the qualitative research relate to addressing the research questions.
Final Analysis will pull from multiple theoretical perspectives; models that may include anthropology, design, public health, and business will be used to analyze the data.
- Sep 1-16, 2017 – Literature Review
- Sep 17-30, 2017 – Begin contacting potential participants and conduct initial exploratory interviews with both types of research participants.
- Oct 1-25, 2017 – Begin contacting potential participants and conduct in-depth interviews/observations with both types of research participants.
- Oct 31, 2017 – Informal findings presentation with the client.
- Nov 1-30, 2017 – Analyze interview/observation data includes matching what they say with what they do.
- Dec 2017 – Findings report presented to the client.
- Jan 2018 – First draft of thesis to Dr. Squires.
- Feb 2018 – Revised thesis sent to committee.
- Mar 2018 – Revise and resubmit.
- Mar 30, 2018 – Approved thesis submitted to graduate school.
- May 2018 – Defense of thesis.
- May 2018 – Formal thesis presented to the department.
Ancestry.com. (2017, April 27). AncestryDNA Reaches 4 Million Customers in DNA Database. From Ancestry.com: https://blogs.ancestry.com/ancestry/2017/04/27/ancestrydna-reaches-4-million- customers-in-dna-database/
FDA. (2014, March 28). Inspections, Compliance, Enforcement, and Criminal Investigations. From U.S. Food and Drug Administration: https://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2013/ucm376296.htm
FDA. (2017, April 4). FDA allows marketing of first direct-to-consumer tests that provide genetic risk information for certain conditions. From U.S. Food and Drug Administration: https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm551185.htm
Ray, T. (2016, May 12). Consumer Genomics Awareness High but Market Still Nascent, Survey Shows. From genomeweb: https://www.genomeweb.com/molecular-diagnostics/consumer-genomics-awareness- high-market-still-nascent-survey-shows
Rock Health. (2016, August 1). The Genomics Inflection Point: Implications for Healthcare. From Rock Health: https://rockhealth.com/reports/the-genomics-inflection-point-implications-for-healthcare/
Sequencing.com. (2017, August 1). About Sequencing.com. From Sequencing.com: https://sequencing.com/about-sequencingcom
Statistics Brain. (2016, September 2). Average Cost of Hard Drive Storage. From Statistics Brain: http://www.statisticbrain.com/average-cost-of-hard-drive-storage/
Teo, G. (2017, July 26). The Second Coming of Consumer Genomics with 3 Predictions for 2018. From MedCity News: http://medcitynews.com/2017/07/second-coming-consumer-genomics-3-predictions- 2018/