As the development of new technologies advances at a rapid pace, the ability to access, search and link information in new and different ways also continues to grow. Current legislative and governance frameworks regarding data privacy were developed at a time when these possibilities were not foreseen and are now an inadequate fit for this brave new world. Research ethics guidelines in particular struggle to accommodate not only the new mediums of communication, such as social media, but the ways in which this type of data can be harvested (often unknowingly) and connected to formerly disparate pieces of benign or de-identified data to create incredibly detailed pictures of peoples’ lives, views and aspirations. Ethics committees also grapple with assessing the risks and benefits of research at a time when the privacy pendulum has swung from what was a common central belief within the community (and indeed a human right) of the importance of protecting privacy at all costs to a more stratified set of values that include younger generations who actively seek out public connectedness and openly share almost all aspects of their lives in the public domain. How are the views of these generations and their sense of what constitutes risk and benefit captured in the deliberations of ethics committees whose membership often (although not exclusively) is made of Gen X-ers or baby boomers?
One of the real strengths of ethics committees is the diversity of experience and opinions they bring to bear on debating and resolving the ethical challenges of research that is driving new frontiers of technology and its exploration of all that it means to be human. Ensuring multi-generational membership of ethics committees that capture these stratified values can only add to this strength. However there is also a need for researchers and committees to stay engaged with public debate to understand evolving community values regarding privacy and our information. Why? Because one thing is for certain – a pendulum never stays at the peak of its swing for long and it already appears to be on the move again. This time the driving force is not a generational change but the rapid rise of big data and the associated realisation of the tangible market value of our information. Knowledge is power, and data, and the ability to harness and explore it in all its forms, is now big business. As individuals and enterprises join the new race to protect the IP associated with their data and mitigate against the risks that can arise from its misuse, they are also demanding their fair share of the benefits that can flow from its potential exploitation. Principles of privacy, justice and consent in this new context will require new considerations by researchers and ethics committees alike.
This blog may be cited as:
Pitkin, C (2015, 6 October) Ethics and the privacy pendulum. AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/ethics-and-the-privacy-pendulum
Manager Social Responsibility and Ethics CSIRO
Cathy Pitkin is responsible for the management of human and animal research ethics for CSIRO. In this role she has led the development and implementation of a human research ethics framework for the organisation and manages the ethics review and associated support process for research scientists undertaking a diverse range of social, biophysical and interdisciplinary research. She has over 10 years experience working with researchers and research managers across multiple disciplines in considering the ethical dimensions of their research and ensuring that ethics principles are embedded as a core part of research design and implementation. This experience includes research that involves emergent technologies, privacy and other related social considerations. Cathy has an in-depth knowledge of current national ethics guidelines and related legislation and broader frameworks for research ethics governance. She regularly provides training to researchers and ethics committee members and has developed a suite of resources to support good research practice.
Prior to this role she was Director of Communication, Education and Training with CSIRO’s Social and Economic Integration Emerging Science Initiative which focussed on building capacity for and greater consideration of social and economic issues in biophysical research.
Before joining CSIRO Cathy worked in a range of community development, training, project management and communications roles in the private, government and NGO sectors. She has a Masters degree in community and international development and undergraduate degrees in social science and business.