CHIRON scholar Anouk Ruhaak discusses what prompts communities to evolve and how change could impact the validity of a community's consent over time by Anouk Ruhaak and Megan Doerr

Published on Jun 13, 2024. DOI 10.21428/4f83582b.648bd5c0

The CHIRON Toolkit seeks to support the meaningful consideration of communities by scientists conducting secondary data use research and by the oversight committees that enable that research. In some ways, this is a radical proposition: many jurisdictions focus exclusively on the consent of individuals in research. As we push researchers and oversight committees to consider community will, what do we do as those communities (inevitably!) change over time? In this week’s blog post, Anouk Ruhaak addresses what prompts community change, and given that change, for how long a given definition of community applicable within the context of repository-enabled research.

Community evolution and the validity of consent over time

When a community consents to data about it being used for a specific purpose, it not only makes a judgement about the impact of this data use today, but also about how this data might impact the community in the future. However, what happens when - over time - the community itself evolves to such an extent that the group of people who consented in the past can no longer be expected to represent the group of people that constitute the community in the present? 

In this blog post we discuss how a community might evolve and how this impacts the validity of community consent over time.

Why communities change

Change is the only constant, yet not all change is born equal. To help us navigate the impact of changes in how a community defines itself on the validity of community consent, let us first consider some of the possible factors that drive change within communities.

First, how a community perceives or defines itself may change due to outside influences. For instance, pandemics, large-scale disasters or economic shocks would likely have an impact on how a community relates to the world as well as itself, as would changes in regulations and rights that affect the members of a community. And, even when the definition of a community stays relatively stable, external influences might motivate a change in its objectives. It’s not hard to imagine, for instance, that a community that was once largely focused on hosting social events might develop a political agenda if the community members discover that their human rights are being infringed upon.

Another reason communities change over time is change in membership. For some communities such shifts are entirely predictable. This is for instance the case with student communities, where most members graduate within four years. New members may not necessarily hold the same values and objectives as the outgoing members, resulting in an ever-changing definition of what constitutes that community. 

In other cases the change in membership could be the result of demographic and cultural shifts. The evolution of the LGTBQ+ community provides a noteworthy example. As society’s understanding of sexuality and gender continues to evolve, the LGTBQ+ community–which was once predominantly focused on gay rights–has grown to include a wide array of sexual and gender identities.

When the size of the community grows we’re also likely to start witnessing fractionalization of the community into smaller communities who may come to define themselves as different from the overarching group. For example, the role and identity of the Korean American community varies by local geography. This is not only because of the variable distribution of the different generations of Korean migrants, but also because of variations in resource availability (e.g. local government grants). Such fractionalization implies that we can no longer refer to the Korean American community as a homogenous group that can be represented by a single voice.

We would be remiss if we did not mention intra-community conflict as a potential driver for change. In many instances such conflict might be driven by the external forces or membership changes mentioned above, yet in other cases conflict may simply reflect the reality that where human beings cooperate, they may end up in disagreement with one another. When conflict cannot be resolved, it might cause the community to fragment or it may cause members to exit the community in search of calmer waters. This happens with some frequency in Open Source Software communities where rifts over values or approaches to software contribution could create the conditions for a break into two or more separate groups with different sets of values, incentives, and identities.

Of course, none of these factors exist in a vacuum: a change in the external environment might inspire a change in the objectives of the community, which could in turn attract a different type of member to join, further reinforcing the new path. Such feedback loops could lead a community so far away from its original identity that the original consent of that community might need to be revised. 

The validity of consent over time

When communities evolve or break apart, there may be a need to revisit the consent they have previously extended. Given this reality, what mechanisms and processes should we have in place to allow communities to revisit their consent or revoke it?

First of all, we need to understand when we may need to check back in and update consent statements. As stated above, all communities change, but not all change warrants the same level of care or attention. In the matrix below we consider community evolution along two axes: 1) the abruptness of the change and 2) the impact of the change on the community.

Some changes will be sudden and its impact will be felt immediately. A natural disaster for instance will likely act as a breaking change, as would finding a cure to a disease for a community of patients. Other changes might occur over a long time period, which is true for demographic shifts. In addition, we differentiate between changes that have a large impact on community definition and consent and those that are less felt. We plotted both speed and impact to create this framework:

Diagram 1: Community Evolution

These are meant as examples of different drivers of change and how they might impact a community. 

Researchers using community data should be prepared for different modes of community evolution (sudden change versus gradual change) as well as its impact on community identity. For instance, we should be able to quickly detect the occurrence of a sudden, high impact event. After such an event occurs we need to have processes in place that re-engage the community and enable reassessing the validity of their consent statements. To ensure we also capture more gradual changes or lesser impact changes there should be a cadence established–ideally before the aggregation of data–for regular check-ins with communities. 

Researchers and oversight committees would do well to remember that the only constant about communities is their constant evolution. Whether rapid or slow, externally prompted or upwelling from within, researchers and oversight committees have an obligation to regularly revisit community consent to research, renewing community intent and involvement, helping to build the bedrock of trust so fundamental to successful research.