“It‘s our DNA, we deserve the right to test!” A content analysis of a petition for the right to access direct-to-consumer genetic testing

• DOI: 10.2217/pme.13.69
• Publication Date: 2013-09-11T07:48:27Z
• Authors: Yeyang Su; Pascal Borry; Ina C Otte; Heidi C Howard
• Keywords: Content (measure theory)

Various companies are currently advertising or selling genetic tests over the internet using a model of provision referred to as 'direct-to-consumer' (DTC). This commercial offer DTC testing (GT) has fueled number scientific, ethical and policy debates. To date there have been few studies published regarding users' perspective. study aimed obtain information issues raised by individuals who signed petition in support GT 'unrestricted' access their information.We conducted qualitative content analysis comments written public online initiated DIYgenomics (CA, USA) "personal information".Of 523 sponsored DIYgenomics, 247 also wrote individual comments. A these reveals that petitioners six main unrestricted GT: ownership DNA should allow them genomic information; they right government no place (further) regulating GT; healthcare professionals not be placed intermediaries when purchasing services; many petioners had already obtained positive experiences with this provision; genealogy ancestry is one activities wish 'direct' access.These results give insight into why may confirm some motivations users for GT. Our brings forefront themes less often empirical involving purchase include strongly held beliefs that, since own DNA, without control physician involvement. Interestingly, left reveal certain distrust governmental agencies professionals. urges us further public's views services potential impact order responsibly address ongoing debate on