Bioethics discussions grow at the Broad
Darwin, Elinor Karlsson's cat
The Broad Institute’s bioethics group owes its existence, in part, to a cat named Darwin. Darwin belongs to Elinor Karlsson, Broad’s director of vertebrate genomics, and when he fell ill in 2017, Karlsson took him to the MSPCA-Angell Animal Medical Center. There, she met Lisa Moses, a veterinarian who directs the center’s Pain Medicine and Palliative Care Service and is also a trained bioethicist. The two began talking about ethics questions.
“It was really interesting to talk to someone who had formal training in ethics and find out that there is more of a framework for thinking about problems than I realized,” said Karlsson, who was running into questions of ethics in her own work on dog genetics. For instance, how, if at all, should she talk about the trait of aggressiveness with dog owners?
Scientific research often gives rise to questions that the scientific method cannot answer. What are the limits to brain organoid research? How should we handle inequalities in access to scientific tools and data? How do we present findings from research on complex issues like psychiatric illnesses to avoid misinterpretation?
Questions like these fall under the domain of bioethics, the evaluation of conflicts between competing values in health and medicine. Bioethics discussions have become more common among the Broad community, as the institute's scientists study and debate topics like the genetics of psychiatric disease in populations in Africa, the need for greater diversity in genetic datasets, and the appropriate use of gene-editing technologies.
“I’ve been at the Broad for a while, and I noticed that recently when there were talks about ethical issues that the rooms were getting more and more full,” said Karlsson.
Karlsson and Moses’s own ethics conversations in 2017 grew into a full-fledged collaboration. In 2018, Moses officially became part of the Broad community as a visiting scientist, and she and Karlsson, along with Harvard veterinarian Steve Niemi, wrote an editorial for Nature on the ethics of genetic testing for pets which was published in July of that year. (Moses's dog, Rudy, was one of the first mixed-breed dogs to participate in Darwin’s Dogs, a citizen science project led by Karlsson that sequences pet dogs' DNA to better understand the genetic basis of health, looks, and behavior.) While working on the editorial, Moses and Karlsson came up with the idea to start a bioethics discussion group at Broad, similar to groups Moses had established at MSPCA-Angell and other institutions.
Their aim in creating the group was to provide a more systematic way for researchers to discuss ethical issues and come up with possible solutions. "Groups like this increase what is usually called ethical imagination, which means viewing our work through the lens of ethics and having a heightened sensitivity to notice issues when they arise,” Moses explained.
Karlsson adds that researchers are used to thinking about institutional review boards and animal care regulations, but those issues are more about compliance, while ethics includes a wider array of questions that don’t always have easy answers. “We all make sure that we follow the institutional review boards and animal care and consent regulations, but there are a lot of gray areas in between,” Karlsson said.
To gauge interest, Moses and Karlsson set up a poster at an institute-wide retreat in late 2018, asking people what ethics topics they wanted to talk about. “We got inundated with questions and ideas and thoughts and opinions,” said Karlsson.
In early 2019, the pair chaired the first meeting of the ethics discussion group, Bioethics@Broad. Each meeting is based around an ethics question suggested and presented by a member of the Broad community. “It’s meant to be a very practical, problem-solving kind of discussion,” said Moses. “I really want people to use the group as a resource to actually bring problems that they have not solved and use the varying perspectives of the group to come up with solutions.”
So far, Bioethics@Broad has covered questions like:
How much scientific detail do researchers need to give to people participating in citizen-science projects to ensure they understand the work?
Is it ethical to clone pets?
What should researchers do when they find actionable, pathogenic mutations that are unrelated to a participant’s reason for enrolling in a genetic research study (also called incidental findings)?
At the fourth and most recent meeting in June, Grace VanNoy and Melanie O'Leary, genetic counselors with Broad’s Rare Genomes Project, presented the above question related to incidental findings to a group of more than 40 people. The attendees, who play diverse roles at the Broad, voiced multiple opinions on the question and Moses guided the discussion so that it ultimately provided several possible courses of action.
“It’s reassuring that there is a strong focus on awareness of how the work that we’re doing here does not exist in a silo from the world, and if we’re going to be the first to do something, it deserves time for reflection,” said VanNoy.
Opportunities for reflection and discussion can be especially important because regulations governing scientific research can take time to catch up to questions raised by new discoveries and tools. “I’m really interested to see, in the long haul, whether regulations that exist now will be updated based on these bioethical questions,” said Diane Genereux, a research scientist in Broad’s vertebrate genomics group who helps organize the meetings.
Jen Lapan, principal software product manager for the Broad’s Data Donation Platform (DDP), has attended several Bioethics@Broad meetings and says they are a valuable opportunity to hear about a range of bioethics concerns that impact groups doing work at Broad that differs from her own team's work. Members of the public enrolled in projects like Count Me In and Rare Genomes Project are using the DDP software created by Broad's Data Sciences Platform, and Lapan says that weighs heavily in the minds of the software developers. “I don’t think there’s anybody on our team who doesn’t understand the gravity of that,” said Lapan. “It’s excellent that with Bioethics@Broad there is a dedicated cross-platform environment that’s facilitated by experts where people can talk about some of these fundamentally important and critically interesting aspects of research.”
For researchers who aren’t comfortable talking in a group setting about ethics questions related to their work, Moses has offered to provide individual, confidential ethics consultations. Ethics consultations are an established practice in medical settings, and Moses was trained in conducting them during a fellowship with Harvard Medical School’s Center for Bioethics. Since then, she has adapted the consultation process for scientific research settings and provided consultations for nonprofit organizations involved in field research, zoos, and labs at several academic institutions. “I would love to be available as a resource for any lab or scientist at the Broad who wants help working through an ethical question related to their research one-on-one. They’re absolutely welcome to contact me,” said Moses.
Bioethics@Broad plans to continue holding regular meetings after a summer hiatus. Both Karlsson and Moses emphasized that Broadies who take part in the meetings will be the ones who shape the future of the group. The two hope that through the group, bioethics discussions will become a bigger part of daily life at the institute.