Symposium Overview and Full Schedule

Streaming Media

Location

University of Massachusetts Medical School

Start Date

6-4-2017 11:45 AM

Description

Objective: The objective of this presentation is to demonstrate how current research ethics policies and procedures can fail to achieve meaningful privacy and consent from human subjects in data-related research areas, and additionally, to provide the beginnings of a supplementary framework that researchers can use to define meaningful consent.

Methods: I will illustrate failures of current research ethics involving lapses in privacy and/or consent from three case studies of published research based on user data from Facebook, OkCupid and Ashley Madison.

Results: The standard mechanisms by which we measure ethical soundness is producing morally questionable research when applied to some data-related research. While the policies and procedures of journals and regulatory bodies need to adapt to meet these new contexts, researchers can take ownership of the ethical ramifications of their work.

Conclusions: I submit that researchers need to develop and train in a new subset set of ethics, called Data Ethics, or the applied framework of ethical principles in data-related inquiry, and beginning with a meaningful definition and test for consent is a good start.

Keywords

data, ethics, consent

Creative Commons License

Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 License.

research_values_interrogation_worksheet.docx (62 kB)
Sex, Lies, and Data Presentation Handout

Share

COinS
 
Apr 6th, 11:45 AM

Sex, Lies, and Data

University of Massachusetts Medical School

Objective: The objective of this presentation is to demonstrate how current research ethics policies and procedures can fail to achieve meaningful privacy and consent from human subjects in data-related research areas, and additionally, to provide the beginnings of a supplementary framework that researchers can use to define meaningful consent.

Methods: I will illustrate failures of current research ethics involving lapses in privacy and/or consent from three case studies of published research based on user data from Facebook, OkCupid and Ashley Madison.

Results: The standard mechanisms by which we measure ethical soundness is producing morally questionable research when applied to some data-related research. While the policies and procedures of journals and regulatory bodies need to adapt to meet these new contexts, researchers can take ownership of the ethical ramifications of their work.

Conclusions: I submit that researchers need to develop and train in a new subset set of ethics, called Data Ethics, or the applied framework of ethical principles in data-related inquiry, and beginning with a meaningful definition and test for consent is a good start.

 

To view the content in your browser, please download Adobe Reader or, alternately,
you may Download the file to your hard drive.

NOTE: The latest versions of Adobe Reader do not support viewing PDF files within Firefox on Mac OS and if you are using a modern (Intel) Mac, there is no official plugin for viewing PDF files within the browser window.