Background

Quantified self-experimentation with personal health enables individuals to collect, analyze, share and act upon a range of data about themselves through n=1 (single-subject) trials. Physical and cognitive functions such as body weight, athletic performance, sleep quality or mood can be monitored and experimented with using self-tracking devices, consumer genomic and microbiomic services, and online health networks. This creates new opportunities for a unique form of a citizen science-style research participation.

Probably the most popular self-experimentation platform, the Quantified Self (QS), enables enthusiasts to share their quantified self-tracking projects via online forum discussions and internationally-distributed meetup groups. Besides the QS network, there is a variety of other smaller forums, podcasts and wikis dedicated to self-experimentation, such as The Quantified Body podcast or the Soylent forum discussing personalized powdered diets. There are also groups of more extreme biohackers and transhumanists experimenting with their bodies beyond the 'normal' healthy states. Users of Longecity and Biohack.me share their findings from experiments with nootropics, psychedelics microdosing, or subdermal sense-enhancing implants. 

While the QS and biohacking groups rely mostly on self-governance, there is also hybrid model of expert-amateur communities run by academic and healthcare institutions or crowdfunded health ventures using professional lab equipment. These include, for instance, the PatientsLikeMe platform where users aim to resolve their diagnosed health conditions by sharing their medical records and discussing possible treatments. Self-experimentation activities of both  patients and health enthusiasts are often supported by direct-to-consumer (DTC) genomics and microbiomics services such as 23andMe, Ubiome, or My.microbes. Users can share, discuss, and act upon their results while being invited to contribute not only to their personal improvement, but also to the advancement of participatory healthcare and citizen science.

The growing popularity of health self-experimentation raises many hopes and fears related to the future uses of health data. Advocates mention numerous advantages, such as the low processing costs and greater velocity of hypotheses, as compared to the conventional health studies. Hands-on engagement with personal health and peer support in the communities can also have a positive impact on participants' scientific literacy, self-understanding, and emotional wellbeing. However, there are also certain limitations that curb these celebratory accounts, such as the low scientific validity of n=1 experiments; safety risks of self-guided health interventions; ambiguous privacy aspects of open data sharing; and limited socio-economic access to technology and knowledge resources.

These issues are mostly related to the multiplicity of self-experimentation stakeholders pursuing diverse and sometimes conflicting goals. Apart from self-experimenting practitioners, the stakeholders include commercial app developers, citizen science-like enterprises, and corporate healthcare providers who may seek for (citizen) science and healthcare advancement, as well as financial profit. The strong asymmetry in terms of who uses the benefits from the health data sharing platforms is the main problem we will address within the workshop. The workshop participants representing various stakeholder groups are invited to reflect upon their perspectives, interests, and affiliations in health self-experimentation through performative and hands-on activities. Our main goal is to define future participatory models of health data sharing services that will better respond to the concerns and ideas raised during the workshop. We hope to collectively reach a design framework for transparent, just and responsible health self-experimentation practices.

VENUE

The workshop is organized as part of the CHI'17 conference, May 6-11, 2017 Denver, CO.