Lately I’ve been reading, discussing, and thinking about the concept of “participation.” It’s an idea that gets thrown around a lot but without too much examination or critique. Specifically, I am researching theories and frameworks of “participation” as it relates to my dissertation. The question I’m asking is: does giving people access to their own genetic data increase their participation or level of empowerment: in their health care, in their research participation, in their lives in general?

While my project is about consumer genomics, my literature searches on “participation” have rippled out into politics, economics, media studies, and social and information sciences. Understanding how and where ideas of “participation” are invoked, and with what consequences, draws on all these fields. The topic is particularly salient in this age of digital information, where the ubiquity of the Internet and social media offers us unprecedented platforms to create, consume, and interact.

Below I’ll throw out some the ideas I’ve encountered in my literature search. This will be a bit of “spaghetti on a wall” type of exercise, so feel free to “participate” as much or as little as you’d like.

Dimensions of participation

Information scientist Kelty and colleagues [1] tease out seven dimensions of participation and examine how different projects or communities stack up on these different dimensions. The dimensions get at things such as: whether participants have control over resources (tangible or informational) and to what extent they help to define goals and tasks of the project. Perhaps my favorite dimension is the affective experience of participation, delightfully described as “collective effervescence.” Do you feel like you are participating?

The authors give Facebook as one example of a participatory project that succeeds in some dimensions while falling far short in others. Ability for Facebook users to participate in decision-making or goal-setting is basically nonexistent. On the other hand, the collective effervescence is staggering. We skip along, posting, liking, registering one of six emotions (like, love, wow, haha, sad, angry), and all the while Facebook accrues a staggeringly large, profitable, and powerful database of its 2 billion users [2].

Participation vs. engagement vs. involvement

In another paper, Woolley and friends examine the idea of “participation” as invoked in biomedical research [3]. It’s become very trendy to tap into ideas of “citizen science” and “participatory research” even in more centralized, national research strategies. But this article argues that we should distinguish between three things: participation, engagement, and involvement. People may “participate” in studies simply by signing a consent form and giving a biological sample. But are they really engaged? Probably not. There’s not typically an ongoing relationship between the participant and the researcher, and the participant is not really weighing in on any part of the research in a democratic sense (e.g., developing research questions, interpreting what the results mean, etc.).

I’m reminded of the different levels of participation in our political system. I might participate in our democracy simply by voting in major elections, but am I really engaged? Engagement seems to mean something more, maybe expending extra effort to stay on top of political news outside of major elections cycles and to regularly call my representatives to voice my opinion on various proceedings.

Empowerment with a hint of coercion

Moving into consumer genomics, my dissertation area, direct-to-consumer (DTC) companies have arguably introduced a more participatory form of genetic research. People can opt into research studies on a study-by-study basis (versus an up front, blanket consent to myriad possible uses of their data), and they receive access to information about their genome (not so in traditional research). This does seem more participatory. By the Kelty dimensions of participation, this comes in strong on resource control: people get to access their own data, not just contribute it to a larger effort; and affective capacities: customers can join online discussion boards, some oriented towards specific genotypes, as well as connect with family members if they so choose. You can just hear the collective effervescence fizzling.

But there are tensions underlying this participatory model of DTC genetics, some of which have been articulated by anthropologist Sandra Soo-Jin Lee and media scholar Kate O’Riordan. Lee has described how consumer genomics is concerned with “biological potential” — the idea that personal genetic information has some future ability to help people. But there are questions of power: who is equipped and positioned to realize the biological potential of having their genetic information? My question then becomes to what extent are DTC companies able to realize the collective biological potential of their customer base (probably quite a lot) to the exclusion of individual customers being able to realize and harness that potential? It’s not that the companies are ill-meaning, but it’s just a fact that for the most part studying genomes in the aggregate (i.e., lots of people at once, as is done in the research context) is more valuable than studying individual genomes. This is partly a result of the current state of genomics knowledge, so this might shift in the future. But as it stands, for most people, studying their individual genome is unlikely to lead to great insights about their health and identity.

O’Riordan has written about how DTC genetics and the subsequent access of personal genetic information by lay persons has created a “new digital genomic public” capable of new “readings” of genomes, now circulated as digital texts [4]. (Without delving into the full article, let me just assure you these ideas are as cool as they first sound.)  Skipping ahead to one of her conclusions:

“The features of DTC genomics are contradictory but indicate the conditions of a contemporary collectivity that is at once embodied and informatic, empowered and coerced, personal and public.”

Empowered and coerced — exactly. People submit samples to get genetic testing so that they can receive information about themselves, perhaps leading to empowerment, but in so doing they are perhaps coerced to share this information with others. Note that DTC companies generally allow customers to opt in or out of research, so people aren’t exactly coerced into participating in research. But they do become part of the company’s database, which can be used more broadly than just for research.

The Janus-face of empowerment and coercion circles back to the titular question of this post:  do we participate in Facebook? Kelty’s dimensions of participation show us how Facebook is participatory in some ways but not in others. My own personal experience of Facebook is definitely one of empowerment with a hint of coercion. Despite my misgivings about how much data Facebook has on all of us, I continue to use it for the convenience of staying in touch with friends and family. To get what I want, I stay hooked into the system.

This is not to demonize Facebook, but rather to articulate these tensions of participation, or being able to do what we want, and coercion into giving up some privacy or control over or personal (perhaps our genetic) data. We don’t need to quit using all these services, but at a minimum we should keep a critical eye on when and under what conditions we are being invited to participate.

 References

[1]        C. Kelty et al., “Seven dimensions of contemporary participation disentangled,” J. Assoc. Inf. Sci. Technol., 2015.

[2]        “Is Facebook A Structural Threat To Free Society?,” TruthHawk (blog), 13-Mar-2017. [Online]. Available: http://www.truthhawk.com/is-facebook-a-structural-threat-to-free-society/. [Accessed: 27-Mar-2017].

[3]        J. P. Woolley et al., “Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives,” BMC Med. Ethics, vol. 17, no. 1, p. 33, Jun. 2016.

[4]        K. O ’Riordan, “Biodigital Publics: Personal Genomes as Digital Media Artefacts,” Sci. Cult. (Lond)., vol. 22, no. 4, pp. 516–539, 2013.