Introduction
Background
While the clinical validity of genetic tests is growing, there emerges a concern that the disclosure of individuals’ genetic test results could lead to discrimination by health insurers and employers (Hudson et al., 2008). Federal legislation addressed the protection of individuals’ genetic information by passing the Genetic Information Nondiscrimination Act (GINA) in May 2008. The law prohibits health insurers and employers from using an individual’s genetic information in making eligibility or employment decisions, enforcing them to treat individuals with genetic diseases or predispositions equally as those whose diseases are nongenetic. Privacy remains a sensitive issue as genetic testing for medical purposes becomes increasingly personalized. For-profit companies offering genetic tests directly to consumers, yet without full approval from the FDA, are especially controversial in their scientific validity and privacy standard. Founded in 2006, 23andMe is the first privately held company to make genetic tests available to consumers as an alternative to tests delivered by health care providers. Users collect their saliva sample at home and mail it back to the company lab for a report on their carrier …show more content…
On the one hand, the existence of privacy policy itself may not warrant full understanding of the privacy implications. On the other hand, if consumers do not read carefully, their understanding may be insufficient. I explore these two aspects separately. First, I assess the effectiveness of forced reading in helping people understand the consequences of using direct-to-consumer genetic test. Second, I measure the effects of verbal and visual characteristics of privacy policy on people’s reading and understanding of direct-to-consumer genetic
Background
While the clinical validity of genetic tests is growing, there emerges a concern that the disclosure of individuals’ genetic test results could lead to discrimination by health insurers and employers (Hudson et al., 2008). Federal legislation addressed the protection of individuals’ genetic information by passing the Genetic Information Nondiscrimination Act (GINA) in May 2008. The law prohibits health insurers and employers from using an individual’s genetic information in making eligibility or employment decisions, enforcing them to treat individuals with genetic diseases or predispositions equally as those whose diseases are nongenetic. Privacy remains a sensitive issue as genetic testing for medical purposes becomes increasingly personalized. For-profit companies offering genetic tests directly to consumers, yet without full approval from the FDA, are especially controversial in their scientific validity and privacy standard. Founded in 2006, 23andMe is the first privately held company to make genetic tests available to consumers as an alternative to tests delivered by health care providers. Users collect their saliva sample at home and mail it back to the company lab for a report on their carrier …show more content…
On the one hand, the existence of privacy policy itself may not warrant full understanding of the privacy implications. On the other hand, if consumers do not read carefully, their understanding may be insufficient. I explore these two aspects separately. First, I assess the effectiveness of forced reading in helping people understand the consequences of using direct-to-consumer genetic test. Second, I measure the effects of verbal and visual characteristics of privacy policy on people’s reading and understanding of direct-to-consumer genetic