The Personal Genome Project UK is asking for 100,000 volunteers to have their genome sequenced, and made freely available online for all to see, where anonymity is not guaranteed. They are “dedicated to creating public UK genome, health, and trait data. Sharing data is critical to scientific progress, but has been hampered by traditional research practices—our approach is to invite willing participants to publicly share their personal data for the greater good.” (PGP-UK)
The benefits of the project will be societal in nature, and won’t occur immediately. The most likely outcomes of participation include “the generation of large numbers of hypotheses by researchers about specific traits, the scientific evaluation of these hypotheses, and an expansion of our understanding of how genetic variation contributes to both the diversity and connectedness of human experience.” (PGP-UK Benefits)
They are asking for volunteers who are curious about their genome, and who wish to contribute to science and eventual societal impact. They stress that there is no immediate personal gain to volunteering, and they outline the many possible risks this new endeavour involves (PGP-UK Risks): “In principle, anyone with sufficient knowledge could take a participant’s genome and/or other personal information and use them to:
- infer paternity or other features of the participant’s genealogy
- claim statistical evidence that could affect employment or insurance or the ability to obtain financial services for the participant
- claim relatedness to criminals or incriminate relatives
- make synthetic DNA corresponding to the participant and plant it at a crime scene
- reveal propensity for a disease currently lacking effective treatment options“
Both The Guardian and the BBC have run articles highlighting these risks, and urging caution from people thinking of signing up. Once your genomic data is out there, it will be impossible to recall it, potentially leading to the risks listed above.
Are medical advancements, scientific discovery, and self-curiosity enough to persuade you to have your genome sequence published? Or are you more worried about the potential risks? Do you think this project is ethically OK to perform? I’m currently leaning more on the side of getting my genome sequenced to further science, but am still weighing up the risks vs benefits. Self-curiosity will probably win through though! For the greater good.