"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

Personalized Medicine
Yeyang SuHeidi Carmen Howard

Abstract

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. 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". 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 profess...Continue Reading

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Citations

Mar 25, 2016·Journal of Medical Ethics·Michele Loi
Jun 3, 2016·Journal of Medical Ethics·Matthew Wai Heng Chung, Joseph Chi Fung Ng
Dec 19, 2015·Journal of Medical Internet Research·Loredana CovoloUmberto Gelatti
Nov 19, 2017·Journal of Community Genetics·L KalokairinouP Borry
Sep 22, 2021·International Journal of Circumpolar Health·Sardana KononovaSardana Fedorova

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