September 17, 2015
by Bioethics Program Alumna Courtney Jarboe
With the 25 year anniversary of the Americans with Disabilities Act (ADA) on July 26, 2015, there have been several articles such as commemorating the implementation of the ADA. However, I appreciated Wyatt Massey’s CNN article, The ADA at 25: What’s next for disability rights? He suggests there is more to be done such as destigmatization of being someone with a ‘disability’ and improved accessibility in the digital era. It’s this second point, I’d like to look at from the perspective of medical research and ethics. As Massey notes,“accessing the Web can be difficult for people who are deaf, blind or otherwise disabled, although such tools as voice-recognition software are helping reduce barriers to getting online.”
In research in general and medical research specifically, Internet-based research is booming. But is research in the digital era accessible? Are the digital advertisements, electronic surveys /questionnaires, informed consent processes accessible to the deaf, blind, and otherwise disabled? As an administrator of an Institutional Review Board, the question of accessibility is raised when we develop new educational material for our research community, but when we reach the stage of IRB review, accessibility isn’t usually a topic of discussion. Are we doing justice by not considering accessibility of digital research materials? Is it in the purview of the IRB to consider accessibility?
The Belmont Report offers some insight under the principle of Justice. Under this principle there is a brief commentary on the competing forces of balancing an individual’s opportunity to be a part of research’s benefits and burdens. The report suggests,
…even if individual researchers are treating their research subjects fairly, and even if IRBs are taking care to assure that subjects are selected fairly within a particular institution, unjust social patterns may nevertheless appear in the overall distribution of the burdens and benefits of research.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.