\n\tBy MARTY LEVINE<\/p>\n
\n\tPatients with tough epilepsy cases are being videotaped for a week or longer in the hospital while their brain activity is being monitored by intracranial electroencephalography (iEEGs) \u2014 how do you protect their privacy, as well as the privacy concerns of their visiting friends and family, not to mention those of the healthcare professionals in and out of their hospital rooms at all hours?<\/p>\n
\n\tGraffiti artists can face potential arrest \u2014 how do you catalog their work in its context, as art, without creating a guide for police to take action against them?<\/p>\n
\n\tUsing naloxone on opiate overdoses, providing sterile needles to intravenous drug users and employing other hands-on interventions can save lives, the research shows \u2014 how do you train healthcare workers to do this work after the federal government no longer believes it is effective?<\/p>\n
\n\tFirst grants were awarded this spring from the Research, Ethics and Society Initiative (RESI)<\/a> of Pitt Research to answer these and other conundrums created by today\u2019s research objectives and methods. A second round of grants is already being planned.<\/p>\n \n\tThe goal of these grants, says RESI\u2019s programming director, Bridget E. Keown, is to \u201crecognize exceptional research\u201d while making sure that scholars have the resources to understand how their research fully impacts the individuals involved and their communities, \u201cand how the research could improve outcomes for everyone involved.\u201d<\/p>\n \n\tThese new Ethical, Legal and Social Implications (ELSI) grants of $2,500 to $10,000 are of two types. The research supplement grants, for example, might aim to let researchers examine the hidden impacts of technology on how they incorporate \u201cthe representation of others\u2019 stories, culture or history\u201d; or help researchers whose projects develop societal interventions for a \u201cpressing educational, social or health-related challenge,\u201d overcome \u201cbias in its implementation\u201d or other barriers faced or stigmas potentially created; or aid researchers whose works pose concerns about privacy and data sharing.<\/p>\n \n\tCurriculum grants may allow faculty \u2014 for example \u2014 to develop new science course modules, in collaboration with humanities faculty, aimed at showing students ways to advocate for responsible research policies; to examine \u201cthe history and ethics of employing nonhuman animal models in research\u201d and evaluate alternatives; or to help students and faculty consult with experts to \u201cdevelop policies governing the ethical use of generative AI.\u201d<\/p>\n \n\t\u201cWe wanted to foster work that could create new conversations, especially at the current moment when funding is more difficult to come by\u201d for certain types of research, says Keown, a teaching associate professor in the Gender, Sexuality & Women\u2019s Studies Program in the Dietrich School of Arts & Sciences). \u00a0\u201cWe thought one of the most effective ways to do that would be to sponsor that research\u201d right here at Pitt.<\/p>\n \n\t\u201cAnd for us that was the exciting part,\u201d she added. All of the grant recipients \u201care also voices in a discussion of what ethical research looks like across fields. These conversations are so varied and so very insightful. They will be critical to their fields, modeling best practices, forging paths in their research that are going to be incredibly meaningful to those who come after them.\u201d<\/p>\n \n\tThese RESI grants, she noted, can let researchers assemble a new team as part of their efforts to critically assess their own work \u2014 \u201cto create a way that you are analyzing and critiquing your own study from a different vantage point\u201d and \u201cto create time and space for people to observe their own work, their own field, to really address internal and external operation of the work they are doing.\u201d<\/p>\n \n\tThe chosen grantees are diverse by any definition:<\/p>\n \n\tThe grant to Avneil Ghuman, neurological surgery faculty member in the School of Medicine, will help him assess privacy concerns for epilepsy patients, their caregivers and visiting family and friends in a study taking place here and at four other institutions nationwide.<\/p>\n \n\tCharting patient behavior and physiological conditions across a week or more poses unique challenges, but \u201cwhat constitutes sufficient notice or \u2018opt-out\u2019 opportunity\u201d for the clinicians and visitors constantly stepping into the study space? How will the gathered audio and video records \u201cbe archived, shared and disseminated,\u201d not to mention anonymized?<\/p>\n \n\t\u201cHow do we get proper informed consent?\u201d he asked. \u201cYou\u2019re basically recording a person\u2019s life for a week in the hospital,\u201d so that includes everyone around them.<\/p>\n \n\tThe RESI grant will allow his team over the next year, Ghuman says, to conduct interviews of 50 to 100 people \u2014 the epilepsy patients, their visitors and the clinical staff \u2014 to \u201cput together a map of what the different concerns are and develop second interviews.\u201d Together, these interviews should result in a new informed consent document.<\/p>\n \n\t\u201cIt has a lot of potential to inform how we talk about any real-world research in a hospital setting,\u201d he says.<\/p>\n \n\tDietrich School faculty member Caitlin Bruce (Communication) and School of Computing and Information faculty member Chelsea Gunn, who teaches master of library and information sciences students about archives and records management, teamed to lead the RESI grant concerning graffiti.<\/p>\n \n\t\u201cStreet art and graffiti are global movements with significant histories, social, cultural and aesthetic legacies,\u201d their proposal said. \u201cWithout an archive, the work and history of artists ends<\/a> in their lifetimes. \u2026 What are models for archiving street art\/graffiti practice (practitioner histories and the art they create) that balance the imperative to be comprehensive and to respect privacy and avoid surveillance\u201d of the artists?<\/p>\n \n\tBruce and Gunn plan to spend this fall surveying best archival practices, then this spring interviewing the archivists as well as inviting scholars to Pitt for public lectures and meetings with their project team.<\/p>\n \n\tNext year they will visit archive sites and eventually devise their own archive model.<\/p>\n \n\tSuch art has been the focus of Bruce\u2019s scholarship for the past 15 years, she says, but the RESI grant is the first such assistance for this work.<\/p>\n \n\tPittsburgh\u2019s Graffiti Task Force has their own archive to build criminal cases against graffiti artists, she notes, \u201cso it is super tricky. As an academic, it is part of our (methodology) to document as much as you can… but how do you document\u201d in a way that is meaningful but safe for the artists?<\/p>\n \n\tThus, the RESI grant is a unique opportunity: \u201cThey are prioritizing this question of an ethical approach to research as opposed to quick results,\u201d Bruce says. \u201cThe Research, Ethics and Society Initiative creates a space to think about this question. The most important part is caring for people and their stories.\u201d<\/p>\n \n\tBrayden Kameg, associate dean for Graduate Clinical Education in the School of Nursing, leads the project examining how to train nurse practitioners and other healthcare professionals in management of substance abuse disorders in the face of shifting federal regulations. The RESI grant will allow her team to bring to Pitt panels featuring those who have benefited from harm reduction services, which Kameg has seen is \u201creally impactful and helps to solidify what they are learning\u201d in the school.<\/p>\n \n\tOf course, ethical concerns have long been part of the modern healthcare curriculum, she allows. But she has seen \u201ctrepidation and fear of: \u2018How do I translate this into clinical practice?\u2019\u201d among the school\u2019s students, when it comes to helping those with substance abuse disorder.<\/p>\n \n\t\u201cThere are things we know we should impress upon our students,\u201d she says. \u201cThey know the harm is reduced, but when there are legal concerns, those need to be addressed.<\/p>\n \n\t\u201cI\u2019m really excited to get involved with this program and institute team\u201d at RESI, Kameg says. \u201cI think they are certainly an underutilized resource within the University.\u201d<\/p>\n \n\tRESI\u2019s other two grantees are Cynthia Croot, theatre arts faculty member, looking at \u201cdeveloping and publicly presenting a performance that uses three Abrahamic wedding ceremonies to explore the conditions necessary for respectful coexistence of differing cultural commitments\u201d; and Zoe Hendrickson, faculty in Behavioral and Community Health Sciences in the School of Public Health, who will \u201cidentify and develop ways to address concerns about the ethical, legal and social implications of the collection of reproduction-relevant data within Nepalese and Indian communities.\u201d<\/p>\n \n\tMarty Levine is a staff writer for the University Times.\u00a0Reach him at martyl@pitt.edu<\/a> or\u00a0412-758-4859.<\/p>\n \n\t\u00a0<\/p>\n \n\tHave a story idea or news to share?\u00a0Share<\/a>\u00a0it with the University Times.<\/p>\n