By MARTY LEVINE

Patients 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) — 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?

Graffiti artists can face potential arrest — how do you catalog their work in its context, as art, without creating a guide for police to take action against them?

Using naloxone on opiate overdoses, providing sterile needles to intravenous drug users and employing other hands-on interventions can save lives, the research shows — how do you train healthcare workers to do this work after the federal government no longer believes it is effective?

First grants were awarded this spring from the Research, Ethics and Society Initiative (RESI) of Pitt Research to answer these and other conundrums created by today’s research objectives and methods. A second round of grants is already being planned.

The goal of these grants, says RESI’s programming director, Bridget E. Keown, is to “recognize exceptional research” while making sure that scholars have the resources to understand how their research fully impacts the individuals involved and their communities, “and how the research could improve outcomes for everyone involved.”

These 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 “the representation of others’ stories, culture or history”; or help researchers whose projects develop societal interventions for a “pressing educational, social or health-related challenge,” overcome “bias in its implementation” or other barriers faced or stigmas potentially created; or aid researchers whose works pose concerns about privacy and data sharing.

Curriculum grants may allow faculty — for example — to develop new science course modules, in collaboration with humanities faculty, aimed at showing students ways to advocate for responsible research policies; to examine “the history and ethics of employing nonhuman animal models in research” and evaluate alternatives; or to help students and faculty consult with experts to “develop policies governing the ethical use of generative AI.”

“We wanted to foster work that could create new conversations, especially at the current moment when funding is more difficult to come by” for certain types of research, says Keown, a teaching associate professor in the Gender, Sexuality & Women’s Studies Program in the Dietrich School of Arts & Sciences).  “We thought one of the most effective ways to do that would be to sponsor that research” right here at Pitt.

“And for us that was the exciting part,” she added. All of the grant recipients “are 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.”

These RESI grants, she noted, can let researchers assemble a new team as part of their efforts to critically assess their own work — “to create a way that you are analyzing and critiquing your own study from a different vantage point” and “to 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.”

The chosen grantees are diverse by any definition:

The 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.

Charting patient behavior and physiological conditions across a week or more poses unique challenges, but “what constitutes sufficient notice or ‘opt-out’ opportunity” for the clinicians and visitors constantly stepping into the study space? How will the gathered audio and video records “be archived, shared and disseminated,” not to mention anonymized?

“How do we get proper informed consent?” he asked. “You’re basically recording a person’s life for a week in the hospital,” so that includes everyone around them.

The RESI grant will allow his team over the next year, Ghuman says, to conduct interviews of 50 to 100 people — the epilepsy patients, their visitors and the clinical staff — to “put together a map of what the different concerns are and develop second interviews.” Together, these interviews should result in a new informed consent document.

“It has a lot of potential to inform how we talk about any real-world research in a hospital setting,” he says.

Dietrich 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.

“Street art and graffiti are global movements with significant histories, social, cultural and aesthetic legacies,” their proposal said. “Without an archive, the work and history of artists ends in their lifetimes. … 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” of the artists?

Bruce 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.

Next year they will visit archive sites and eventually devise their own archive model.

Such art has been the focus of Bruce’s scholarship for the past 15 years, she says, but the RESI grant is the first such assistance for this work.

Pittsburgh’s Graffiti Task Force has their own archive to build criminal cases against graffiti artists, she notes, “so 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” in a way that is meaningful but safe for the artists?

Thus, the RESI grant is a unique opportunity: “They are prioritizing this question of an ethical approach to research as opposed to quick results,” Bruce says. “The Research, Ethics and Society Initiative creates a space to think about this question. The most important part is caring for people and their stories.”

Brayden 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 “really impactful and helps to solidify what they are learning” in the school.

Of course, ethical concerns have long been part of the modern healthcare curriculum, she allows. But she has seen “trepidation and fear of: ‘How do I translate this into clinical practice?’” among the school’s students, when it comes to helping those with substance abuse disorder.

“There are things we know we should impress upon our students,” she says. “They know the harm is reduced, but when there are legal concerns, those need to be addressed.

“I’m really excited to get involved with this program and institute team” at RESI, Kameg says. “I think they are certainly an underutilized resource within the University.”

RESI’s other two grantees are Cynthia Croot, theatre arts faculty member, looking at “developing and publicly presenting a performance that uses three Abrahamic wedding ceremonies to explore the conditions necessary for respectful coexistence of differing cultural commitments”; and Zoe Hendrickson, faculty in Behavioral and Community Health Sciences in the School of Public Health, who will “identify 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.”

Marty Levine is a staff writer for the University Times. Reach him at martyl@pitt.edu or 412-758-4859.

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