Henrietta Lacks, the Tuskegee Experiment, and Ethical Data Collection

Author: Adriene Hill

Publisher: Crash Course

Publication Year: 2019

Summary: The following video provides important background on the context and consequences of data-driven research relative to the foundational elements of statistics. It also provides links to historical instances of data abuse to the current problems with data ethics and privacy. It challenges the reader to ponder questions like: “Where can data collection go wrong?,” “Who and how will they be impacted by using this data?,” and “Are users being coerced to provide their data?” The host outlines 3 considerations: voluntariness (users should have the autonomy to choose whether or not they would like to participate); informed consent (users should be able to clearly understand what they are agreeing to; this means that descriptions need to be simplified or translated if necessary), and beneficence (reduce risks to users should outweigh any benefits or application of the research).