Post-event report: Think Before You Spit: Responsible Business and Genetic Testing
How DNA Curiosity Beats Consumers’ Mistrust
Access the webinar recording here
During recent years, DNA home testing kits (such as 23andMe, AncestryDNA, MyHeritage DNA) have seen a rise in popularity worldwide. This is despite an ongoing lack of understanding amongst consumers about the risks and benefits of using such products and despite lack of regulation.
The DNA home testing kits are marketed to consumers as safe products that will offer valuable information not only on family tree genetics but also health predispositions and even offer a medical diagnosis, which is not only inaccurate but also deceitful. Additionally, little information is being provided to consumers on how their personal and genetic data is stored and used within and outside the company.
In this webinar we discussed the initial findings from research focused on understanding consumers’ motivations and decision process for buying such products, how they use the information provided and what the outcomes are; and how they regard the companies’ (ir)responsible business practices based on their current knowledge.
The research team, associates of the Lloyds Banking Group Centre for Responsible Business, Dr Sarah Forbes and Dr Diana Gregory-Smith, and their colleague Dr Klara Scheurenbrand, interviewed a sample of adults from various genders, ages and occupations to discuss the key questions of motivation and understanding of benefits and risks in genetic testing. Their research produced several interesting findings:
- The strongest drive in undertaking a DNA test is ancestry and family interest, followed by identity ambiguity, i.e. people wanting to understand what ethnicity they are.
- A majority of respondents were not aware of how their data was going to be used and showed some concern about this.
- Consumers tend to be oblivious to the potential risks to their data privacy and legitimise third party access through their utilitarian and higher ethical prioritises and normalise unethical business practice by generalising these. Some likened it to sharing information on social media. Others thought sharing data would be helpful to the system e.g. by helping to solve criminal cases.
- Consumers' personal interest is much bigger than concerns over data privacy.
- Consumers believe the more data is shared the more reliable the results.
This research, proudly funded by the Lloyds Banking Group Centre for Responsible Business, will have implications for consumers, policy makers and regulators and look to provide recommendations for improving transparency and awareness among consumers, particularly around risk and complications following genetic testing. It also aims to explore ethical issues such as that of consent and generational consent (because even with your consent your DNA is inherently shared with that of your relatives) and look at how protection can be placed to ensure public or private services (e.g. insurers) cannot discriminate against somebody based on the results of a health DNA test.
This was a fascinating webinar on a research area with huge potential to make an impact and inform regulation and policy. Watch this space for further updates.
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