“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

Abstract

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

KEYWORDS::

• direct-to-consumer
• genetic testing
• petition
• qualitative analysis

Financial & competing interests disclosure

Part of this work was supported by COST Action IS1303 and the FWO-project 11Q5714N (Research Foundation Flanders). Y Su is funded by FP7-IDEAS-ERC research project “Bionetworking in Asia: A social science approach to international collaboration, informal exchanges, and responsible innovation in the life sciences” (project reference: 283219). HC Howard is funded by the European Commission FP7 Marie Curie career development award. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Ethical conduct of research

The authors state that they have obtained appropriate institutional review board approval or have followed the principles outlined in the Declaration of Helsinki for all human or animal experimental investigations. In addition, for investigations involving human subjects, informed consent has been obtained from the participants involved.

Additional information

Funding

Part of this work was supported by COST Action IS1303 and the FWO-project 11Q5714N (Research Foundation Flanders). Y Su is funded by FP7-IDEAS-ERC research project “Bionetworking in Asia: A social science approach to international collaboration, informal exchanges, and responsible innovation in the life sciences” (project reference: 283219). HC Howard is funded by the European Commission FP7 Marie Curie career development award. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.