The HUMAN Project Announces New Ethics Advisory Council (EAC)
EAC will ensure there are ethical frameworks in place for big human data research
Updated on March 29, 2017 (Original Post: September 20, 2016)
New York, NY
Over the past decade, the technologies for collecting and analyzing large quantities of data from the average person have proliferated exponentially, primarily for consumer marketing purposes,
but increasingly for scholarly research. Unfortunately, the protocols and ethical framework for collecting and utilizing that information have not evolved to address this reality. As a result, the number of well-publicized big data research ethical missteps over the last few years has grown. As each misstep occurs, it is added to the discussion, complete with its own set of media articles about what happened and why it should not have happened. The research community must analyze each instance in the face of an understandable public outrage, attempting to find a way to avoid that particular misstep in the future.
Each incident, regardless of what aspect of a given research project instigates the public outcry, follows the same pathway: discovery, publicity, outrage, analysis by the research community and, maybe, regulatory bodies. These missteps do not arise from ill intentions, but from researchers whose studies fall into the ethics gap––the regulatory no-man’s-land inhabited by a rapidly increasing number of projects involving big data and emerging technologies.
Despite many great minds and groups figuring out how to regulate the use of big data by industry, the academic world has fallen behind in determining the constraints under which scholars should conduct big data research. In addition to a lack of consensus on how to regulate scholarly big data research, many institutions and individual researchers are unwilling to comment “on the record” about big data ethical issues for fear of being misinterpreted or fueling the next public outcry. The HUMAN Project (THP) cannot operate in this ethical Wild West, and its leadership recognizes the need and the imperative to lead the way in forging an ethical framework for big data research. To accomplish this, the THP is convening a newly constituted Ethics Working Group that brings together leading experts in the fields of ethics & data privacy, research, and technology to create the roadmap for a responsible approach to big data research that extends beyond the THP.
The HUMAN Project is pleased to announce that that working group is now officially an advisory council that plays a large role in the governance of the study. The goal of the Ethics Advisory Council (EAC) is to make sure that both The HUMAN Project and the research community at large are better prepared to approach and conduct big human data research and take all necessary precautions to ensure the protection of participants as much as possible. This means:
• Minimizing obvious risks and searching for those that are less obvious;
• Being aware of biases and accounting for them during analysis; and,
• Listening to––and communicating with––the research community and the public.
Research cannot exist in a vacuum, nor can it continue without public support of its mission and its methods. Ethical missteps in big data research lead to the very real possibility of a breach in the public trust. Only through pursuing every avenue possible to protect our study participants and the integrity of the data we use for research can our community ensure that the research we produce is valid.
The research community cannot afford even the potential for ethical missteps and must respond by determining a clear ethical path forward: The EAC will provide that path. Below are the EAC members, click here to read their biographies
- Martin Abrams, Executive Director, Information Accountability Foundation
- Arthur Caplan, Director, Division of Medical Ethics, New York University
- Pam Dixon, Executive Director, World Privacy Forum
- Martha Farah, Director, Center for Neuroscience and Society, University of Pennsylvania
- Robert Goerge, Chapin Hall Senior Research Fellow, University of Chicago
- Lynn Goldstein, Sr. Foundation Strategist, Information Accountability Foundation;
Chair, Privacy & Security Advisory Council, The HUMAN Project
- Hank Greely, Director, Center for Law & the Biosciences, Stanford School of Medicine
- Pilar Ossario, Professor of Law and Bioethics, University of Wisconsin-Madison
- Jennifer Miller, Assistant Professor, Division of Medical Ethics, New York University
- Camille Nebeker, Assistant Professor, School of Medicine, University of California San Diego
- Rebecca Robbins, Postdoctoral Fellow, Center for Healthful Behavioral Changes, New York University