The commercialization of our DNA : a qualitative study of attitudes regarding ancestry DNA tests

Abstract

This thesis focuses on DTC genealogy testing and consumer attitudes regarding these tests. DTC genetic ancestry tests have become popular among Norwegian consumers, as technological development has made them easily accessible and relatively affordable today. By sending in a sample of your DNA for a genealogy company to examine, you are now able to track down your heritage and receive an overview over where in the world you have genetic connections. The amount of people purchasing this service has led privately held genealogy companies to possess databases that contain some of the world’s largest collections of human DNA. They are profiting on people’s interests in genealogy. It is therefore sensible to call this a commercialization of our DNA. This phenomenon poses both positive and negative consequences for society. Databases can be used to improve public health by contributing to medical research, as well as improving national security by allowing law enforcement to search through databases in their investigations. However, for-profit companies possessing large pools of human DNA information poses risks and ethical dilemmas, such as privacy issues, exploitation and sales to third parties. We have provided relevant background information regarding these tests and the market they operate in. Further, we have presented some of the relevant terms from the companies’ consent forms, included laws and regulations that are essential in this context. Relevant literature on topics such as holism and ethics of happiness and meaning has been examined before being applied to our analysis. Through interviews with 10 people, we have been able to attain a broad span of thoughts and beliefs regarding DNA ancestry tests. This has helped us to understand what people feel about these tests, their hopes and concerns, and possible motives to conduct a test. Main reasons for wanting to conduct a test comes from positive influence by friends, curiosity of the results and the need for entertainment. Our findings show that the main reasons why people refrain from taking these tests are distrust in motives of the companies. Several worry that they are exploiting people for money. Another essential reason is that several do not trust the accuracy of the tests. An interesting finding is that our sample did not seem to care particularly about privacy issues. This was not an essential reason from refraining from taking a test. We have tried to stress that this could be a common trait among Norwegians, as social trust in Norway is high. This could also explain why our respondents clarified that they would rather share their data with governmental institutions in Norway than in the US. We have concluded with providing a list of commandments for people considering conducting a DTC genealogy test. As further research is the aim of this whole thesis, we have focused on this in the concluding chapter. We hope our thesis can be a starting point for future research on the topic, as we believe issues regarding genetic testing will become even more relevant in the coming years.