Article by Jasmine McNealy: “The 23andMe breach and the Golden State Killer case are two of the more “flashy” cases, but questions of consent, especially the consent of all of those affected by biodata collection and analysis in more mundane or routine health and medical research projects, are just as important. The communities of people affected have expectations about their privacy and the possible impacts of inferences that could be made about them in data processing systems. Researchers must, then, acquire community consent when attempting to work with networked biodata.
Several benefits of community consent exist, especially for marginalized and vulnerable populations. These benefits include:
- Ensuring that information about the research project spreads throughout the community,
- Removing potential barriers that might be created by resistance from community members,
- Alleviating the possible concerns of individuals about the perspectives of community leaders, and
- Allowing the recruitment of participants using methods most salient to the community.
But community consent does not replace individual consent and limits exist for both community and individual consent. Therefore, within the context of a biorepository, understanding whether community consent might be a ceiling or a floor requires examining governance and autonomy…(More)”.