GENETIC TESTING SERVICE ADOPTION BY USERS AND THEIR DATA SHARING PREFERENCES

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GENETIC TESTING SERVICE ADOPTION BY USERS AND THEIR DATA SHARING PREFERENCES

Abstract

Direct-to-consumer genetic testing services have expanded alongside the proliferation of the Web. Greatly simplified access to the Web allows consumers of these services to receive detailed, personalized reports about their ancestry, health, phenotypic and genotypic information. In addition to determining the test-taker’s genetic makeup, genetic details of the test-taker’s family members are also indirectly revealed through direct-to-consumer genetic testing. As such, taking a genetic test contains personal and interdependent privacy considerations, considerations that  serve as the main motivation for this thesis. We find that these considerations play important roles in genetic test-taking service adoption, genetic test-taking service recommendation, and trust in organizations or institutions receiving test-taker data.

We conduct two studies using the methodology of factorial vignette surveys. In study one, we assess how attitudes and perceptions of interdependency influence genetic test service adoption. Specifically, we examine the factors that make someone more or less likely to take a genetic test, along with the factors that make an individual more or less likely to recommend a test. Additionally, we judge to which degree psychological factors influence stated adoption choices and privacy concerns by studying the influence of different thinking styles (construal level). In study two, we investigate how variables of ethnicity, age, genetic markers, and association of data with the individual’s name affect the likelihood of sharing data with different types of organizations. We also investigate elements of personal and interdependent privacy concerns. We document the significant role these factors have in the decision to share or not share genetic data with a third party. We also propose a deterministic model that accounts for differences in sharing preferences among individuals who share data with academic, medical, or governmental organizations.

Chapter 1

1.1 Introduction

The recent proliferation and advancement of science associated with personal and personalized medicine has brought substantial benefit to those who seek information endemic to such advances. Personalized genetic and genomic testing are two such examples of these recent scientific and medical breakthroughs. Over the past several years, this science has been commercialized, allowing individuals to purchase a genetic test that affords them the opportunity to learn their ancestral history, carrier status, and trait characteristics. Doctors and patients are now able to better understand the biological and environmental factors that effect an individual’s health (Kaufman et al., 2009; Telenti et al., 2014). One of the key issues of the broad dissemination and availability of genetic data is consideration of data privacy (Rodriguez et al., 2013; Erlich and Narayanan, 2014).

Genetic data, the basis from which we learn about our genetics and genome, is a unique data type that differentiates itself from other data types (Naveed et al., 2015). Genetic and genomic data include personal information endemic to the individual (Naveed et al., 2015; Humbert et al., 2014; Lemke et al., 2010). Furthermore, genetic data can provide information about the health of of an individual’s family members. (Naveed et al., 2015). These characteristics make genetic data valuable to an individual and their family (Naveed et al., Humbert et al., 2013; Pulley et al., 2008). But the ability to tie genetic data back to an individual, or an individual’s family, is also the basis upon which privacy concerns associated with genetic data have arisen (Hull et al., 2008; Pulley et al., 2008; Haga et al., 2011; Naveed et al., 2015; Garrison et al., 2015).

Federal statues like the Genetic Information Nondiscrimination Act (GINA) make it illegal for health insurance providers “to use or require genetic information to make decisions about a person’s insurance eligibility or coverage” and make it illegal for employers “to use a person’s genetic information when making decisions about hiring, promotion, and several other terms of employment” (National Institutes of Health, 2016). However, GINA does not protect from genetic discrimination in every circumstance. GINA does not apply when “an employer has fewer than 15 employees,” and does not protect individuals in the U.S. military “or those receiving health benefits through the Veterans Health Administration or Indian Health Service” (National Institutes of Health, 2016; Green et al., 2015). Furthermore, GINA does not protect from genetic discrimination in forms of insurance other than health insurance (National Institutes of Health, 2016). Abuse of genetic data, including data leaks, computer intrusions, and non-disclosure violations, leave individuals susceptible to blackmail and genetic discrimination practices (Gottlieb, 2001; Naveed et al., 2015).

When an individual takes a genetic test, they are not only revealing information about themselves, they are also revealing information about their family members (Naveed et al., 2015). This qualifies this data type as having “interdependent privacy considerations” (Yu and Grossklags, 2016). The interdependency of privacy, refers to the phenomenon that in an interconnected setting, the privacy of individual users not only depends on their own behaviors, but is also affected by the decisions of others (Yu and Grossklags, 2016). Personal and interdependent privacy concerns, in relation to the sharing genetic data, form the main pillars of this thesis. In this thesis, we explore how interdependent privacy concerns affect the willingness of individuals to share their genetic data. We also examine the willingness to take, or the willingness to recommend taking, a genetic test. The element of trust is also examined across both papers presented in this thesis. To our knowledge, the varied conditions under which individuals would be willing to share their genetic data, alongside scenarios under which individuals would be willing to take a genetic test, have not been examined thoroughly. Additionally, the opinions and perspectives of family members who have had relatives take a genetic test have not been covered to our knowledge.

1.2 Research Questions

Based on the current and rapid expansion of personalized medicine, and in regards to the ever-increasing affordability and accessibility of genetic testing, we seek to understand the variables and factors that influence genetic test service adoption, and isolate elements that affect sharing preferences for individuals who have taken a genetic test. With this in mind, we present the following research questions:

Study 1, Research Question 1: What is the impact of factors varying the context of a genetic test scenario on the assessment of intention to use and intention to recommend a genetic testing service, perceived contributions to health awareness, and trust in the service provider?

Study 1, Research Question 2: What is the impact of factors varying the context of a genetic test scenario and data breach scenario on the assessment of personal privacy and interdependent privacy concerns?

Study 1, Research Question 3: Is a higher construal level of the portrayed decision-maker associated with an increase in the assessment of the intention to use and intention to recommend a genetic testing service, perceived contributions to health awareness, and trust in the service provider?

Study 1, Research Question 4: Is a higher construal level of the portrayed decision-maker associated with an increase in the assessment of personal privacy and interdependent privacy concerns?

Study 2, Research Question 1: To which degree do demographic characteristics and factors related to genetic testing impact perceptions of trust, personal and interdependent privacy, and the intention of sharing own genetic data with a third party?

Study 2, Research Question 2: To which degree do demographic characteristics and factors related to genetic testing impact perceptions of trust, personal and interdependent privacy, and the intention of recommending to another individual to share genetic data with a third party?

1.3 Structure of Thesis

 In presenting the contributions described above, the rest of this thesis is structured as follows. Chapter 2 presents a review of previous work conducted that relates to genetics and genetic data privacy. Chapter 3 describes our first study entitled Understanding Interdependent Privacy Concerns and Likely Use Factors for Genetic Testing: A Vignette Study. Chapter 4 describes our second study entitled A Vignette Study On Personal and Interdependent Privacy Concerns, and Sharing Intentions for Genetic Data. A discussion of the survey tool Amazon Mechanical Turk is presented in chapter 5. Lastly, concluding remarks are presented in Chapter 6.

GENETIC TESTING SERVICE ADOPTION BY USERS AND THEIR DATA SHARING PREFERENCES

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