Bioethics, Informed Consent, and Open Networks: The Story of Bioethics Day

Last fall, inspired by our reading of The Immortal Life of Henrietta Lacks in Biology and English, my students put on a “day of learning” for students from two other high schools, in addition to our own. We called it “Bioethics Day.”

The impetus behind Bioethics Day was pretty simple: we had read The Immortal Life of Henrietta Lacks with sophomores the year before, but the Biology teacher and I wanted to do something more with it; we wanted to ask students to create something bigger with it. We asked ourselves “What is the coolest thing we (teachers and students) could possibly do with this book?” One Friday afternoon, in conversation with a colleague from a neighboring school system, we came up with the idea of a mini-conference, in which students would have opportunities to participate in labs, seminar discussions, and a variety of other activities. Ideally, we would have guest speakers, and we wanted to turn the event into an opportunity for students to network with their peers from neighboring schools, both within our system and neighboring systems.

We knew informed consent would be a big issue, as it is in the case of HeLa cells, and we wanted to link to other cases related to this issue, including our own state’s history of forced sterilization. Our students don’t have access to a lot of lab equipment, so we wanted to borrow microscopes from the community college so that students would have an opportunity to look at their own cells. Most of all, we wanted students to have an opportunity to plan and facilitate as much of the event as possible. We sketched out a rough outline in about ten minutes, and began working on implementation with students the following Monday.

Planning Bioethics Day: Promotion

The first stage of our planning for Bioethics Day was to promote the event. We wanted to make sure, early on, that students knew they had several different authentic audiences for Bioethics Day, that they knew who these audiences would be, and that they anticipated what these audiences would want to hear. We drew numbers from a hat to sign up for five different groups: Inviting Teachers and Classes, Inviting Dignitaries, Inviting the Guest Speaker, Inviting Families, and Press Releases. Guidelines and rubrics for this part of the process can be found here. Each group worked collaboratively in Google docs to craft their invitations or press releases, which allowed me to leave feedback every night (for groups who requested it) and highlight as I proofread later drafts.  One member of each group emailed the final draft where appropriate, and we printed the letter to parents on school letterhead and stuffed envelopes. The group responsible for emailing guest speakers waited about a week to send their email as we worked out which of our options for guest speakers was likely to be able to attend, and we moved on to the next stage of our process: Preparation.

Planning Bioethics Day: Preparation

While we were able to work through the Promotion stage fairly quickly (it took about a week), Preparation for Bioethics Day took a lot longer. We followed a similar process for signing up for six groups: Preparatory Materials, Seminar, Cell Lab, Center 1, Center 2, and Center 3, except that the Biology teacher identified four students to plan and facilitate the Cell Lab. Guidelines and rubrics for this stage of the process can be found here. Students again worked in Google docs, although the Cell Lab group found it easier to format their materials in Microsoft Word and then upload their work to Google Drive for sharing.

This stage of the process also involved more research: the Preparatory Materials group used some materials from our study of The Immortal Life of Henrietta Lacks, but they also had to search for a brief article participants could read for background on Henrietta and her cells before coming to Bioethics Day; similarly, the Seminar group searched for and summarized the stories of additional victims of North Carolina’s forced sterilization program, so that participants could have a text for reference during the Seminar discussion; and the Cell Lab group drew on a variety of lab activities they found online to generate their own template for writing up a lab report. The groups for the three Center activities, which together comprised one session, also conducted research on the Tuskegee Syphilis Study and Nazi medical experiments, and returned to the text of The Immortal Life of Henrietta Lacks to create infographics about how far across the globe (and into space) Henrietta’s cells traveled and the impact of HeLa cells on medical research.

Planning Bioethics Day: Day Of

As we approached the actual date, we began multi-tasking: our planning shifted towards signing up for facilitative roles (again, by drawing numbers from a hat), but we also remained focused on revising and honing the materials we created, with the exception of Preparatory Materials, which we published to attending teachers. We held several dress rehearsals, during which students received feedback from both peers and teachers: the Cell Lab group facilitated their lab, students rotated through Centers, and our Social Studies teacher gave up his planning period to observe  a run-through of Seminar A while I observed Seminar B (the Seminar group wanted to split that session into two smaller groups so participants would have more opportunities to speak). Each preparatory group used this form to develop a rubric by which they wanted Judges to evaluate their work on the Day Of (our principal sagely suggested we synthesize these into a single rubric, which can be found here).

At the same time, students were preparing for the actual Day Of (guidelines can be found here): creating materials for training judges; making copies and organizing materials for Seminars, the Cell Lab, and Centers; making lists of interview questions; and organizing registration materials (agendas, nametags, and schedules). Students also identified and volunteered for additional speaking roles I had overlooked: at the beginning of the day; during lunch; facilitating a panel discussion with guest speakers following a screening of their film; and thanking guest speakers. These volunteers met with me during lunch and shared drafts of questions and speeches in Google docs for feedback during the days preceding the Day Of.

During this stage of the process (and on the Day Of), our parents and faculty also offered invaluable support by donating drinks, chips, plates, napkins, and cups; making gifts for guest speakers and organizing gift baskets; and running out to get more pizza when it became clear we were going to run out.

Bioethics Day and Connected Learning

Though we didn’t plan with Connected Learning in mind, it turns out that Bioethics Day does, in fact, meet many of the principles and values of Connected Learning:

Our study of The Immortal Life of Henrietta Lacks became production-centered, in that we were constantly looking for information that we could share during Bioethics Day; our planning for Bioethics Day was driven by the interests of students (and what they perceived as the interests of their peers); students and teachers worked with a shared purpose (putting on Bioethics Day) in mind while planning, and we were pleased to see participants in Bioethics Day collaborating across barriers of age and geography; the fact that Bioethics Day was almost entirely student-facilitated promoted a culture of peer leadership within our school; and as a culminating event in a cross-disciplinary study, Bioethics Day was definitely academic in focus.

On Open Networks, Digital Standards, and Privacy Concerns

The principle that hangs me up is “Openly Networked.” If I think about networks as systems and people, I can talk for days about how Bioethics Day broke down walls between curricula, between school and home, between school and community, and allowed us to connect with neighboring schools (and school systems), not to mention a university halfway across the state. All of this took place on the campus of the community college that houses our school, which is in itself a kind of “open network.” The evidence is all right there in the video, which includes footage of: students, parents, and teachers participating in discussions and labs; students from a neighboring school system presenting their work with genetic engineering; and a student-facilitated panel discussion with film-makers enrolled in Wake Forest University’s Documentary Film Program.

You won’t see students using a lot of technology in that video – all of the tech that’s there is supporting oral presentations. I could argue the point that students shot the video, but I ended up editing it after school was out, so that feels like an implementation that’s weaker than it should be. Overall, Bioethics Day feels more analog than digital.

And while sharing the video itself might count as “open networking,” it’s really not that open. I have it set to “Private” on YouTube, which means you’re only seeing it embedded here because I provided the link. It’s not searchable; it’s part of a network that I, as teacher, have some control over – I get to choose where it gets embedded, and who sees it. I maintain that control because my students navigate a world-wide web where Predditors exist and will post pictures of teenagers, from any source, without consent, for their pervy pals. I maintain that control because YouTube commenters are THE WORST, and I don’t think my students should have to deal with that mess.

I maintain similar control over the Google Drive folder housing the Bioethics Day-related documents we created. I shared that folder for a conference presentation because (1) I trusted the audience of teachers in the room, (2) students were co-presenters, and their nametags already included first and last names, and (3) their parents gave consent, via field trip form, for their attendance, but this folder includes student first and last names as document creators, and it makes me nervous to have it out there. That nervousness is alleviated a bit by the fact that it’s not in the first five pages of Google results for “Bioethics Day,” but not enough for me to share it here without removing students’ names as “owners” of the documents – something I’m just not willing to do (Note: this is, apparently, a decision district sysadmins feel comfortable making – they’ve now deleted students as owners of some docs, they have deleted some docs outright, and the docs that remain belong to me and several different “deleted users.”). I also maintain control over the documents in the way that I’ve published the folder – interested folks can add materials to their own Drives, but they can’t make any changes to our originals.

I have mixed feelings about this kind of control. I’m controlling these resources to protect my students (as are district sysadmins), but in doing so, I’m keeping students from a wider audience. I want more people to know how awesome my students are, but I don’t want students to become targets for trolls (or worse). I could use TeacherTube or publish our documents as web pages, with authors denoted by first name and last initial, but I want my students to experience the web, and its applications, in as many authentic contexts as possible. That’s why I’m controlling students’ published experience, making it less authentic. That irony does not escape me, and I have no easy answers to this dilemma. My lack of certainty worries me: I think I’m doing the right thing, but what if erring on the side of caution means we’re not fullyexperiencing Connected Learning?

I’m also aware of the ways in which the privacy concerns I have mirror those students and I discussed in our reading of The Immortal Life of Henrietta Lacks: district acceptable use policies and forms are asking for parents’ informed consent for posting of student images, video, and work; in making decisions about what to share (or not share), I’m considering the permissions parents have (or haven’t) given; in areas where I may fall short in addressing these issues, district sysadmins are there to ensure student privacy is protected, a function similar to an IRB.

While I still have questions about authenticity, the process of trying to work through these issues for myself – exploring all of the different kinds of networks my students engaged around Bioethics Day (and the degrees to which they engaged digital networks), and considering issues of informed consent – is instrumental in clarifying my understanding of what Connected Learning really is: it’s not just a useful framework for meaningful use of technology in my classroom, but a framework for meaningful learning.