May 28

The Code Makers

While some within biotech seek to decode life, others seek to create codes to live by. Jason Bobe and Alex Pearlman have worked on codes of ethics within Community Biology at different stages of its development. A decade ago, when the movement was still inchoate, Jason co-organized the “Continental Congress,” a meeting of community biology lab leaders to draft a shared set of values. These codes became the moral backbone of the nascent movement. Eight years later, when the movement had spread across the globe, Alex Pearlman led an effort to revisit these principles at the Global Community Bio Summit. Surprisingly, her group recast the earlier declarations as a set of questions. As biodesign emerges as a practice, does it require a code of ethics? And if so, what are lessons from the code makers?

We asked the same set of questions to Jason and Alex. Below is what Jason said. Click here to read Alex’s answers.

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Jason Bobe has been innovating new ways for nonexperts to participate in biotech since 2007 when he and Harvard biology iconoclast George Church cofounded the Personal Genome Project, an international initiative to find fair and safe methods for individuals to openly share their health data and cells. A few years later, he went on to cofound DIYbio, the forebear of today’s Community Biology movement. More recently he was an Associate Professor and Director of Democratized Health Innovation at the Mount Sinai School of Medicine.

Biodesigned.
You’ve been developing codes of ethics in biology in one capacity or another for quite some time. What kinds of codes have you been working on?

Jason.
The DIYbio codes are my only formal work in “codes of ethics”. If you squint your eyes, the informed consent documents I’ve been developing over my career have similarities with codes of ethics in that ethical values are embedded in them, such as respect for persons, beneficence, and justice. Although, informed consent agreements tend to focus more on communicating about specific activities and their potential risks.

I’ve done some rather novel work with informed consent. Namely, I helped create the consent forms for the Personal Genome Project. The project invites people to volunteer their full genome, information about their environment and traits, and frozen cell lines to researchers around the world. By definition, the informed consent documents for the PGP had to be unique, which meant jettisoning the boilerplate forms and really thinking through the new types of risks that occur when someone openly shares their biological information. In doing so, we were able to emphasize the values of veracity, autonomy, and reciprocity in ways others had not done before. For example, laboratory data generated by the study was shared with the participants who donated the specimens. This practice of “equal access,” where we break down the walls between the scientists and the participants, remains rare in research studies to this day [1].

B.
Why are codes of ethics important to you and why should they be important to the rest of us?

J.
My motivation for the DIYbio codes was to express the values of a nascent community that I and many others believed held great promise for society. Others were more skeptical. Skepticism about any new idea is generally expected. But at the time, the public conversation around this new community fixated on scenarios of inevitable doom ushered by a legion of basement Frankensteins. This seemed like an important moment for the community to reflect on what we stood for and to share that with the world.

At the time, we were saying that biology is the most important discipline of the 21st century. And some of the most important things (medicine, food, materials, pathogen surveillance, etc.) will flow from access to biological tools and know-how. And you can be a part of it!

We wanted to create resources like community labs to spur education and innovation on a local level. We dreamed of having an outpost in every neighborhood. But, we hadn’t really paused to ask whether anyone might want us as a neighbor. What are we all about anyway?

B.
How do you know if a code is a good one?

J.
Good codes don’t have to be binding. Some can be aspirational. These are important because they establish an ethical foundation to build on. The DIYbio codes are an example. They did not establish rules and consequences. Instead, they speak of values that the community aims to live up to. For them to be successful, at a minimum, you want people in the community to nod to themselves after reading them.

B.
As technology evolves, how often should a code of ethics be reconsidered and revised?

J.
While ethical norms do change over time, a decent aspirational code for a community of practice need not necessarily change that much. Sure, modern versions of the Hippocratic oath in medicine no longer invoke the names of Greek gods of healing, but many of the core values (e.g. “do no harm”) have remained unchanged for several thousand years.