Centre for Research Ethics & Bioethics (CRB)

It is your DNA, you should have a say

2016-05-27

Genetic research depends on people donating their samples, allowing their genetic data to travel the world to be compared to data from other individuals. The policy that governs this process needs to be informed by what people really think. To find out, a unique research project is launching an online survey, YourDNAYourSay, to explore global public attitudes and beliefs around sharing genetic information.

We are entering an era of genomic medicine that comes with a unique set of ethical and moral questions, on both the personal and political levels. It also raises questions about the commercial use of people’s genetic information. The Global Alliance for Genomics and Health (GA4GH) and the Wellcome Genome Campus are launching this project to meet some of those challenges.

Heidi C. HowardThe project is very ambitious with its aim to gather opinions from across the world. The evidence gap is huge and there is a risk that policy is made without knowing what the public thinks about how data is shared. Heidi C. Howard, senior researcher at CRB, has been part of the development of the survey that is now being rolled out in English. The idea is to translate it to several other languages to learn from what other communities think, and CRB will take part in the work translating this to Swedish.

This is a ‘film-survey’ experience with a series of short films that introduce the practical and ethical issues of DNA and medical data sharing. The films are followed by a survey, asking for the participant’s views on whether they would donate their data, for what purpose, and if they can see any harms associated with donating. 

The project is part of the Global Alliance for Genomics and Health (GA4GH) and the Wellcome Genome Campus, who has funded the survey with the help of the Wellcome Trust. The results will feed back to the work GA4GH is doing on these issues.

The survey is for everyone. If you want to access and participate in the survey, visit YourDNAYourSay.org today!

Josepine Fernow

YourDNAYourSAy

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