The news last month that genetic testing company 23andMe has suspended its marketing activities after intervention by the US Food and Drug administration (FDA) has again raised a related issue that’s been under debate now for several years. Should non-medically trained members of the public be offered the power to peer into their own genome?
Participatory medicine, where the patient is actively involved in their healthcare, is fast becoming a reality. The ideal of this new concept is that the clinician and patient are part of the same team, with patients feeling empowered by more available information, and taking a more active and responsible role.
In reality of course, things get a bit more complicated. For example, say I ordered a genetic test from a company that offers these services. If it told me that I had an increased risk of developing breast cancer, what would I do with that information? How confident could I be that it was accurate? On the one hand, it could lead to me asking for further expensive tests from my doctor, which turn out to be unnecessary. On the other, it could lead me to self-check more regularly and keep an eye out for early warning signs – actions that could save my life.
The many benefits and pitfalls of participatory medicine, as well as some of the exciting technological advances in this area, are now the topic of a new thematic series from Genome Medicine. Among much fascinating reading is an article published on Friday by Christopher Kelty and Aaron Panofsky, which looks at what we actually mean by ‘participation’ and how we can define it.
This is not an easy task. The authors approached it from two angles: the first was an extensive review of literature from a variety of disciplines, from political theory and participatory democracy, to public administration, and international development; the second was the compilation of an extensive database of case studies (102) about instances of participation (groups, organizations, movements or projects).
The distillation of this work was the identification of seven criteria to describe participation – educative, role in decision making, control and ownership of resources, exit (ability to quit), voice, metrics of participation and communication.
Their discussion highlights how some of the participatory movements and organizations they looked at vary in what they offer people regarding participation.
Coming back to 23andMe, the authors feel it has a clear educative value, offering participants the opportunity to learn about genetics in general and their own genetic background in particular. However, they also identified that while users are allowed to access their risk profiles and download their genetic data, by agreeing to participate they grant 23andMe ownership, control, and discretion about sharing the genetic and survey data even after a they leave. Thus making control and ownership of resources much less participatory.
“With scientific institutions being more exposed to public scrutiny and bearing more of a burden to justify themselves not just to authorities but to the citizenry that supports them, accommodating public participation will become more of an obligation for scientists,” say the authors, in their summary.
With this in mind, getting to grips with the topics covered in Genome Medicine’s new article series, is clearly important not just for researchers in the field, but for all of us. The era of participatory medicine is upon us.
You can read all of the articles from the Participatory Medicine series as they are released on the Genome Medicine website.