by Jim Gearhart, BA, Member of the Board of Directors for Quorum Review IRB
PRIM&R is pleased to share a post from Jim Gearhart, a member of the PRIM&R Blog Squad for the 2014 Advancing Ethical Research (AER) Conference. The PRIM&R Blog Squad is composed of PRIM&R members who will blog here, on Ampersand, about the conference to give our readers an inside peek of what happened December 4-7 in Baltimore, MD.
PRIM&R’s 2014 AER Conference got off to an inspiring start on Friday with perceptive discussions on technology, privacy, and the ethics of research. The conference’s first keynote speaker John Wilbanks shared the innovations that his company is bringing to clinical research through mobile device technology. Sage Bionetworks, where Mr. Wilbanks is the chief commons officer, has assembled a set of mobile device tools to make research participation more convenient. For instance, the accelerometer of a smart phone measures the participant’s strides and level of activity throughout the day. The touch screen can administer a finger-tapping test. And the smartphone can provide interactive, multimedia study information that combines visual icons with text, and prompts responses from the subject to demonstrate understanding.
Mr. Wilbanks told the crowd that his efforts emphasize gathering information for medical research. To demonstrate his point, he put on the screen the dataset of Facebook’s emotional contagion study and issued a challenge: what kind of information might the data from 689,000 users provide medical researchers?
Sage Bionetwork’s approach to informed consent was intriguing. The company has designed a mobile app that clinicians can use to build a consent tool. As part of it, Sage has collected more than 500 icons to represent concepts that frequently appear in consent forms. Mr. Wilbanks categorized those concepts as the “nouns and verbs” of consenting. By assigning icons to those nouns and verbs, Sage created a visual vocabulary to accompany the consent process. As Mr. Wilbanks put it, those visual nouns and verbs form sentences that become a story, the story of what would happen in the study. According to Mr. Wilbanks, understanding of that story averaged 85% for all but one of the topics they tested. For that topic, understanding reached 65%. In 2015, Sage Bionetworks plans to test the long-term results of this storytelling to see how well subjects remember what they learned through their mobile devices. (Sage Bionetworks has made its icons and programming tools available here.)
After the keynote address, I stayed to hear Mr. Wilbanks speak on the next panel, and I’m glad I did. He joined bioethicist Mark A. Rothstein, JD, on a panel discussion on privacy and confidentiality. These two highlighted general concerns of privacy, surveillance, and confidentiality from the research perspective. Professor Rothstein gave an incisive overview of the ethical concerns surrounding research using “big data.” His bottom line was that we should strive to support and preserve an individual’s autonomy over any other concerns. On a practical level, that would mean providing individuals an opportunity to opt-out of huge online research projects such as the Facebook study.
During his portion of the discussion, Mr. Wilbanks argued that we should address issues of confidentiality and anonymity through social norms. Our personal information is out there, and it’s getting easier and easier to access. It’s also getting harder and harder to avoid providing it. But to Mr. Wilbanks, the solution is to force the users of that data to access the data responsibly. Mr. Wilbanks endorses a public users’ pledge, in which users indicate they will act properly and “not like jerks.” Mr. Wilbaks observed that cheating diminishes significantly when schools pledge to act with integrity. He wants to apply that same sociological pressure to the protection of confidentiality.
It was a powerful pair of sessions, a great way to open the PRIM&R conference. These back-to-back discussions had relevance to us both as members of the research community and as participants in a society where we face these issues every day.